For new readers of the blog, or seasoned readers that want an overview!

Hello, and welcome to my blog!  I've noticed a lot of blogs provide an introductory post.  After 10 years, I thought it might be time for me to do the same!

This blog is mostly about our daughter Janey.  She is now 14, and she was diagnosed with autism when she was 3 years and 3 months old.  Our family also consists of my husband Tony (age 56), myself, Suzanne (52), our son William (24), who now lives in Chicago after finishing grad school and our son Freddy (21),  who is a senior in college, and our two cats, Tommy and Merg.

Here's a little about Janey today, and our road to today.

Janey, at 14, is an amazing person.  She's got a personality that draws people to her, a sense of humor, a smile that melts hearts, a talent for and love of music that is amazing.  She is also what would generally be termed low-functioning.  She talks in phrases or single words, and in scripted language from videos.  She doesn't read, write, draw, do math.  Her academic skills are at a toddler level.  She is semi-toileted trained---enough to wear underwear to school with few accidents but not enough to wake up dry most of the time.

Janey was born after a very difficult pregnancy and labor.  She was colicky, but not quite as much as her brother Freddy had been, she would never nurse (I pumped milk for a year) and she didn't walk until she was 2.  However, the one thing that we didn't think was an issue during her first 3 years was autism.  She talked a lot, she was outgoing and engaging and funny.  I remember so well at her 18 month appointment with her pediatrician how he said "Well, one thing we don't have to worry about is autism!" as she tried to engage him all during the time he was examining her brother.  She had early intervention for her motor delays, but never speech therapy from EI.  They discharged her at 3 without referring her for further special ed. services, and we agreed.  The last time her physical therapist saw her, she remarked on how interactive and funny Janey was.

I cry sometimes when I recall those early years.  I have videos of Janey's speech I can't watch to this day.  That is because around the time she turned 3, she stopped talking almost entirely.  She stopped interacting with us.  She stopped smiling.  By the time she was fast-tracked for an evaluation and was diagnosed with autism, it was not a surprise. We already knew.

This blog is not one of those that writes about miracle cures, or amazing breakthroughs.  I wish I could, but Janey in many ways has not made progress from the time of her heartbreaking decline.   Her talking has at no point regained the level it was at when she was 2.

However, I like to think this blog can be one that inspires hope.  There have been dark times with Janey, but today, she is happy, most of the times, and we delight in her, almost always.  The breakthrough we've had is more one of acceptance, but that's not a strong enough word.  It's one of learning to embrace what Janey is, rather than mourn for what she isn't.  I am not a Pollyanna.  There are still many parts of this autism parenting gig that are hard, and most likely will always be hard.  But life with a child like Janey can be a wonderful life.

How did we get to today?  There are many, many little things, but two very big things that I believe led us to our current way of thinking.  Two hospital stays, both during the year Janey was 10, one for psychiatric reasons, which included a stay in a psychiatric hospital, and then, a long hospital stay that involved a burst appendix and many, many complications from that event.  We realized several things from these stays.  One is how little help society is prepared to offer children like Janey with anything but strictly medical issues, with the notable and important exception of the public schools, and the other is how much we treasure Janey---how the very real chance that existed of her dying from her medical emergency made us realize that nothing on this earth was more important than her (and our sons) life, health and happiness.

My purpose in writing this blog is threefold.  First, I want to write about the experience of having a daughter with autism as honestly as possible.  When I was starting out, that is what I craved to read---accounts that told the truth, without an agenda or a bias.  I've tried very hard over the years to be as honest as I could, while respecting Janey's and other family member's feelings and privacy.

My second purpose in writing was to try to find a community.  I felt so alone at first.  It felt like no-one else in the world was living my life.  Gradually, more and more over the years, I met so many wonderful other families, mothers and fathers and children like Janey and siblings like my sons.  I started a Facebook page to further those connections, both for myself and hopefully for others to meet families travelling a path similar to their own.

My third purpose was totally selfish.  I need a place to write about Janey, because writing has always been my way of coping.  When times got tough, or when wonderful things happened, my first thought often was "I want to write about this!"  It has helped me so much over the years to have a place to vent, to cry, to rejoice, to share.  It's also helped me to remember what events were actually like, by being able to look back at what I wrote while going through them.

It would take anyone a long time to read this whole blog from start to finish!  I haven't even done it in full for a while.  So I'm going to put some links here to posts that I think most illustrate points along our way, if you want to get a condensed tour through the last 10 years.  Or jump in anywhere, and if you like, join the Facebook group!  Thanks so much for reading.

Posts to get your started

I put this post first, out of chronological order, because I think it might be the most important post I ever wrote---a heartfelt plea for everyone about how physical pain might be shown very differently in a child with autism than in typical children.  It was written after we almost lost Janey when her appendix burst...

Autism and Appendix Pain

This post isn't one of my better written ones, but it's about a day that's often stood out in my mind as the last day for many years I took Janey out and about alone.  Her behavior that day was scary, and it was the start of some tough times...

The bad McDonalds trip

Here's a post where my pediatrician at the time talked about various labels that might apply to Janey...

Janey around age 5

Talking about labels

An example of the early dark days, when I didn't think anyone read the blog and I was realizing how little help was out there...

Dark Day

When I started thinking about medication, causes and a depressing report I got..

Long Week

A preview of how hard it would be to get good medical diagnoses for Janey's physical illnesses...

Doctor's Appointment Rant

A day I remember as a turning point, when I realized we just couldn't go on as things were...

Unbearable

My reaction to a phrase we as autism parents often hear...

I don't know how you do it

My anger over the summer program the first year Janey went...

Summer Program

One of the many sleepless nights!

Sleepless Night

My fantasy idea for what would REALLY help

The autism center

A post from the thankfully fairly short-lived extreme mischief phase..

Dennis the Menace was a slacker

Details about the drug allergy I truly feel is a leading contender as to what caused Janey's autism..

Aldomet

A day I remember as the start of the 2nd very tough period of Janey's life...

CVS Hell

Going against the general stereotype...

How autism has made me a worse mother

Why I haven't written a book, kind of!

The books I can't write

Why we stopped using the only respite we've ever gotten...

A tough decision

Janey and chocolate...

Why I don't discount anyone's theories

The heartbreaking decision to take Janey out of the inclusion school...

When inclusion is no longer working

The first post in a series about Janey's psychiatric hospitalization..

A Whole New World

Freddy's writing on the rudest people we ever met..

Rude People 

Letting myself be bleak...

Don't read if you are new to autism

The first post about Janey's burst appendix and long hospital stay...

Part One about the Appendix...

Janey now, at age 14

A switch to a new doctor, which should have been years sooner..

The New Doctor

One year after the health crisis, and the start of our new attitude..

One Year out

The first best weekend ever---we've had more since then!

The Best weekend ever

What it's like at our end of the autistic spectrum

Janey's end of the spectrum

How life is now, and it's not a bad life!

Reflecting on progress at the Whole Foods


So there's my probably too long list of posts that stood out to me.  It was hard to choose, and a different day, I'd have chosen a different list, but this list might give you some ideas where to start.

Wherever you are on your journey with autism, I wish you the best.  Please know you aren't alone, ever.

How girls and boys with autism differ....a collection of links

In response to a question on the Facebook companion page to this blog (thanks, Ragon!), I decided to look at various articles about the differences between girls and boys with autism, and give a list of links.  I'm not endorsing the articles here by including them---just trying to provide a variety of takes on the topic!  Three big points seem to keep getting mentioned---of course that less girls than boys are diagnosed with autism, that girls with autism tend to be diagnosed later, and that girls show autism differently, with less repetitive behaviors and more typical special interests.  There's a lot of talk about the brains of autistic girls and boys being different, and some about how the ratio is less skewed in children with intellectual disabilities.

If you have any articles you've found useful I didn't include (there are MANY out there!), let me know about them---I will probably do another post like this at some point.


http://www.autism.org.uk/about/what-is/gender.aspx

A pretty good piece.  It cites a lot of research, and does talk about how when there is an intellectual disability as part of the autism, the ratios get closer to 1 on 1.  But also a lot about how Aspergers type autism is harder to see in girls.

https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html

About the brain differences between girls and boys with autism, and about how boys tend to have more repetitive behaviors than girls.

http://www.icare4autism.org/news/2012/04/differences-in-autism-symptoms-for-boys-and-girls/

A short general review, including notes on how girls are more affected academically than boys, but tend to have less sensory sensitivities and repetitive behaviors.

https://www.verywell.com/differences-between-boys-and-girls-with-autism-260307

A list of differences between boys and girls with autism.  It mentioned as do several other articles that when girls have a special interest, it tends to be more typical than boys special interests--for example, being into music rather than train schedules.

https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

This is a longer and very interesting piece, although it does have a lot of the "girls with autism are harder to notice" type talk.  But it has a lot of fascinating ideas, like that girls with autism have brains that are more like typical boys than like boys with autism, and the idea that it might seem like girls are more severely affected than boys because it takes more clear-cut autistic behaviors for a girl to get diagnosed at all.

http://www.cnn.com/2012/04/04/health/mental-health/autism-sex-differences/

Talks about the differences in ratios in more pronounced autism, and about how sometimes autism in girls can show itself as severe shyness

http://www.health24.com/Medical/Autism/About-autism/girls-and-boys-have-different-autism-profiles-20161027

An interesting note about how girls and boys with autism both often have the same genetic mutations, but girls need twice as many as boys for the autism to be manifested.

https://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter

A long article that is quite well done, with three girls showcased, each with a different level of functioning and different issues as a result.  Talks about how girls are diagnosed later, as a rule.  A personal note---tells about a US researcher with a $13 million grant to study the differences between boys and girls with autism.  I hope there are some blockbusters findings from that study, as $13 would certainly go a long way in providing respite and recreations activities for the girls affected.

https://iancommunity.org/ssc/girls-autism-hiding-plain-sight

A lot about how girls with autism appear more typical than boys...but with the interesting note that girls tends to show more autistic behaviors at home than at school or elsewhere in public.

http://raisingchildren.net.au/articles/autism_spectrum_disorder_in_girls.html/context/1037

This is a good summing up type article, with a lot of the points other articles raise in bullet form.

Flashback

Janey went back to school yesterday.  It was a good Christmas vacation.  She was happy a great deal of the time, and I think she enjoyed herself.  But she seemed pleased to be going back to school, back to the routine she likes.

She came home in a good mood yesterday, and I think school went well.  But something set her off around bedtime---tiredness or frustration over something she couldn't explain or who knows what.  Suddenly she was screaming and biting her arm and kicking and in a full meltdown.

That's when I said, without thinking, "I don't want to take her back to Bradley"  Bradley is the psychiatric hospital Janey spent time over two years ago.

Tony looked at me in surprise.  Once Janey was calm enough for us to talk, which actually didn't take long, he said "You are usually the one telling me not to jump ahead to the worst possible outcomes"  He was so right.  And I've been thinking about what I said all last night and all this morning.

I don't know what stress flashbacks technically consist of, but I think I had one there.  And I think I have them a lot.  No matter how well Janey is doing, it almost always feels a moment away from disaster.  She can be having the calmest, happiest day possible, and I fear that something will happen and things will go horribly downhill, and we will wind up in a hospital of one kind or another, or wind up getting a call from school that we need to have a meeting, we need to talk about her placement, or that Tony will call me from a ride with her and say she undid her seatbelt somehow and caused him to crash, or that some other random disaster will hit.

Thinking about the whole thing yesterday, I keep somehow connecting it to an article I read, one that on the surface doesn't have much to do with her meltdown or my reaction.  Here's a link to the article...link.  It's about a boy with autism who has won a Rhodes scholarship, after his mother took him out of school and gave up a career in medicine to homeschool him when he was eight.  It's a very nice article, and it's wonderful news, and inspiring.  But for some reason, it bothered me a great deal to read.

I've read plenty of articles about autistic people who have done great things, and they often include a parent's huge devotion helping them along.  I think this one just hit my eye at the wrong time.  Janey did so well over vacation, and I read this just as I was worrying about her going back to school.  There is no way I'm going to homeschool Janey.  I couldn't do as good a job as the schools do, and I need the respite desperately.  What hit me was the devotion of the mother.  Truthfully, I feel I'm pretty devoted to Janey.  And looking at all the parents I know of kids with autism, either in person or through this blog, there is so much devotion out there it's incredible.  But it doesn't all lead to Rhodes scholars.  And I'm not saying there shouldn't be articles about the times it does.  There should be.  But sometimes, despite my better judgement, it makes me feel like I somehow didn't devote enough, or didn't put my devotion into the right ways to help Janey.

Both my flashback and my reaction to the article are parts of the stress that I think most of us parenting children like Janey feel.  No matter how well things are going, we remember when it all fell apart.  No matter how hard we work at being good parents, we can find examples that make us feel like we didn't do enough.  I wish I had a pithy thought to put here, something to reassure myself and everyone else reading this that everything is going to be fine, that we are doing all we can for our kids, that we shouldn't have the fears and doubts we do.  But I don't have a thought like that.  I have only a hope that if you've also suddenly flashed back to the darkest times, if you've read an article that makes you feel like a slacker, that if you have lived this life too, you're not alone.

On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.

800th Post!

Eight hundred posts.  Wow.  That's over eight years, but boy, do I like to write a lot, and ramble on at times, and most of all, have all of you to talk to and share lives with.

I thought, for fun, my own fun anyway, I'd look at each 100th post---the 100th post, the 200ths, etc., and see what they were about.  So here goes!

Post 100---"Crying Day"

Okay, that's not a cheerful one to start with.  It's about a common theme---Janey's crying.  She was 5 and a half then, and I was discouraged, and dissing the Holland story.

Post 200---"Toys"

Another theme I hit on fairly often---how it's hard to find toys for Janey, and what kind of toys she does like.  I think I obsess over this a little, as I did here when she had just turned 7.  I like toys.  I love toys, maybe, and sometimes the hardest things to feel at peace about with autism or I think any special need in a child are the things you looked forward to sharing with them that are never going to happen.  Janey's not going to beg me for an American Girl doll, or the latest Shopkins, or anything like that, and I don't think even now I'm quite resigned to that.

Post 300---"Why is the Crying So Hard?"

Another crying post!  This time, I was trying to figure out why crying in particular is something I get so upset by, and just can't ever ignore.  Janey was seven and a half here.

Post 400---"Another Day, Another Book"

A little different!  I love to read, and I do a lot of book reviewing, and that other life snuck into the blog here, in the form of an autism memoir.  I don't read as many of them as I'd think I would---I think I need a break from autism when I read, most of the time.  But when I do read a book about autism, I usually write a blog post about it.

Post 500---"Good Night, Daddy!"

A cheerful one, for a change, about Janey telling Tony good night totally on her own.  She was eight and a half.  Whenever something like that happened, you can tell on the blog that although I'm trying not to get my hopes up, I'm still hoping it's the start of a big new change.  I guess it's good not to give up that hope, but now I do try to enjoy those little moments on their own, without projecting what they might mean for the future.

Post 600---"Letting Go of Janey's Hand"

Written when Janey was nine, this one is about the baby steps I was taking toward letting Janey walk without holding my hand all the time.  Unlike the talking breakthroughs, this one has lasted.  Janey really doesn't bolt any more, and I feel pretty safe letting her walk without holding her hand, even on the sidewalk of our busy street.  It's nice to read back about when I started doing that!

Post 700---"What it's like to visit a psychiatric hospital"

Well, that's not an uplifting one.  I wrote it last December, when Janey was 10 and was an inpatient at Bradley Hospital in Rhode Island.  I wrote this one partly just for myself, to remember what the visits were like, and partly because I was so unprepared for the whole hospitalization time.  I hoped (and hope) none of you ever have to go through that, or go through it again if you have before, but if sometime in the future you did (and it happens more than I ever realized), I wanted others to have a little bit of an idea what it was like.


And here we are at post 800, sort of a clip show post!  It's been a long, strange last 8 years, the eight years since Janey was diagnosed at age 3.  I can see me writing post 1800 some day in the future.  Autism is lifelong, and I will write about Janey until I am no longer able to.  I hope that is a long time from now.

The kind of autism that isn't talked about

As a lot of you might already have done, I read this essay recently.  If you haven't, you might want to read it.  (Link here)

I don't agree with everything said in the essay.  I don't agree that more awareness necessarily would result in less isolation and less lawsuits.  I don't quite agree with how depressing a picture is painted in terms of the numbers of non-talked about kids with autism.  But those are little things.  In general, I agree very much with what is said here, and I applaud the author, Bonnie Zampino, for having the courage to say it.

And I ask myself, why?  Why is there so little awareness or discussion about the type of autism this author's son has, and my daughter Janey has, and so many of the people who read this blog have children with?

I can think of a few reasons.  One is that most parents don't like to present their kids in less than flattering lights.  I'd far rather write a post about some step forward Janey has taken than write about parts of the everyday that are far more depressing---the fact she is 11 and not toilet-trained, the fact she screams and cries part of most every day, the fact she bites her arm so much it has a permanent scar, the fact her communication skills are so poor she suffered with a burst appendix for three days without treatment, unable to tell us how she felt.  I want others to love Janey as I love her, and I am always conscious of not making her "look bad".  And I don't want to appear to be trying to make people feel sorry for me.  I'm very aware of that.  I want people never to feel I am looking for sympathy.  That's my own issue, but I think it affects other parents too.

Another reason the tougher side of autism isn't presented more in the media is because it's not a feel-good story.  I read something recently about those ads on TV trying to get you to sponsor a hungry child, and how they don't generally show starving children.  They show cute, somewhat thin children in piles of trash.  People tend to tune out if they are overly depressed by what is being presented.  It's a lot more appealing (and probably gets higher news ratings) to show the kid with autism winning a spelling bee, or going to the prom, or playing the piano perfectly by ear than to show a child biting themselves or others, or screaming for hours, or banging their heads.  People would be upset by that, and tune it out, most people anyway.

Also, I think people like stories with a villain.  I think that is a lot of why the whole unproven autism/vaccination story had far, far more than its 15 minutes of fame.  It's a villain story--the evil government and medical community poisoning our kids into autism.  The fact that in the vast majority of cases that is not what happened doesn't take away from it being a good story, one that celebrities latch onto.  I've heard that some groups go as far as saying there aren't any adults with autism, because that muddies the story---if autism wasn't caused by too many vaccines, how could those adults have gotten it?  A child with a severe disability that just seems to sort of happen isn't a story we can feel outrage over.

The reality of children like Janey is something that people are not prepared for.  I've had the experience a few times that I am sure a lot of you have had, when Janey is met by someone who hasn't before met close up a child with autism, the experience of watching their expectations crumble.  They expect to be charmed by her quirky and interesting take on life, to form some kind of pure and beautiful connection with an otherworldly, unique child.  When they are faced with the real life Janey, most likely screaming and biting herself, maybe wet from a soaked pull-up, not answering questions or showing any interest in them, or perhaps showing too much interest, wanting them to play a clapping game for an hour on end---they get the stunned look.  I have become very familiar with that look, the look of someone realizing for the first time what autism really looks like.

It would be fine for most of the world to continue to have their sanitized view of autism, if that didn't mean that they weren't preparing for a future with a lot of Janeys in it.  Whenever people vote down money for group homes or moan about how much is spent on special education or continue to support organizations that give almost no money for actual direct care of the Janeys out there (yes, Autism Speaks, I'm talking about you), they are building a world that is going to be in for a huge surprise when someday, the Janeys are no longer able to be cared for at home.  People like Janey exist.  They are out there.  They matter.  I am going to try hard to be one of the voices that DOES talk about the other autism.  It's what I can do, from this little corner, tell my own story and hopefully, be a voice for Janey---my  beloved daughter with the kind of autism that isn't talked about.

Turning a negative ritual into a positive ritual

Whenever I write about something that has worked with Janey, I feel I have to say that I can't promise it will still work a day later, to say nothing of anything longer term than that.  But today's little triumph was very interesting to me, and I wanted to share it even if it doesn't last.

This all got started after I wrote a despairing post on my Facebook page that is a companion to this blog, about Janey screaming over and over and how it made it so impossible to get out of the house.  One of my great Facebook friends, Audrey, posted a link to this site, which talked about a method using a clicker of reinforcing good behaviors in lower functioning kids with autism.  The click clearly tells them they have done a good job, and they get a reinforcing treat for that, eventually not every single time, but after a certain number of good times.  The article was followed by some pretty extreme comments by people that didn't like this method at all, and felt it was treating the kids like "animals", but I didn't feel that way.  It seemed like a pretty mild and easy way to tell kids they were doing well, by making a sound that wasn't used for any other reason and then by reinforcing good behavior, like "quiet mouth" (not screaming)

However, the problem with this method for Janey is nothing really works as a positive reinforcer on a long term basis.  She doesn't have any food she always likes that can be easily given as a treat, she doesn't care about stickers or little toys or anything like that.  And I am not sure she'd get having to wait for more than one instance of good behavior for a treat.  Thinking about it, I realized her favorite reinforcer is just plain praise, given in a way that's part of a bit of a ritual.  Lately, when she's done something very good, I say "Great job!  High five!  Thumbs up!  A-OK!", and give her a high five, a thumbs up and a symbol of A-OK with my fingers.  She loves that.

So, I waited until a minute she wasn't screaming, and said "Great job not screaming!" Then I went through the whole routine.  I did that about 10 times in a row, keeping on saying what a great job she was doing not screaming.  And then I waited, and didn't have to wait long, for her to ask the question she asks a million times a day "Want to go to Maryellen's house?"  If I say no to this request to go to my friend's house, she screams.  So this time, when she asked it, I said "I'm going to say no, and if you don't scream, I will say 'Great job not screaming!' and give you a a high five and thumbs-up and A-OK!"  I then said "No, we can't go to Maryellen's house" and without any time in between for her to start screaming, immediately started the praise routine.  She looked surprised and kind of pleased.  I said "Let's try it again!  Ask again to go to Maryellen's house!" which she looked positively startled to hear, as usually I try to discourage that repeated question.  She asked again, and I again did the praise routine.  We did this over and over, each time leaving a little more time for her to maybe scream after I said no, but she didn't!

I was worried when she asked again a few hours later, it wouldn't work, but she asked with a look in her eyes that let me know she was waiting for the fun praise routine, and I gave it to her.  She did the same thing about 10 more times later in the day,  and every time, she didn't scream.  I felt a rare feeling of having actually accomplished something with her.  Maybe I've turned a question that had become a ritual of anger into a fun ritual.

Janey has been cheerier this afternoon than she has in a few days.  I think I might have finally found something she actually does get reinforced by, and it's not so much praise, although that's a part of it, as it is a set routine.  I have been letting her set the routines, and they were not routines I wanted.  I think I need to try to set the routines and rituals myself, at least some of the time, and try to make them positive ones.

We'll see if this keeps working!

Another New Year's Eve, and a look back

I decided to look at my last post of each year since I started this blog, when Janey was 3.  It was an interesting exercise.  A couple things struck me.  One is that I kept, each year, desperately looking for progress, finding signs of it, listing them and then, the next year, without realizing, listing the same things again.  The progress ebbs and flows, but it doesn't seem to really be a forward line.  Another thing is that the end of the year has been a quite tough time a few of the years.

2008 Last Post of the Year Link

In 2007, I'd just started the blog, and didn't really write any year end post.  At that point, this blog was more of a diary. 2008 was a lot the same.  Strangely, what I wrote for the last post there sounds like it could have been written about the past few months---hitting the TV, biting, scratching.  Janey was only 4 then, and so the behavior was easier to handle, but it's a little startling to see it started then, with quite a few years in between that she has less acting out.

2009 Last Post of the Year Link

Janey's love of Christmas music hit that year, and it's fun to read about that.  I was starting to realize how severe Janey's intellectual disability was, and how her talking was very limited.

2010 Last Post of the Year Link

Janey was 6 that year.  It was a tough year, the year she had such a terrible time around June, and we started her on medication.  I reflected about the lack, once again, of a miracle breakthrough, and was starting to see it wasn't ever coming.

2011 Last Post of the Year Link

I was a little more upbeat that year, the year Janey was 7.  I remember that as one of the better years.  I went back to the theme of how limited the progress was, but I also wrote about cute things she was doing.  We were learning to enjoy our little girl as she was, not for what we were hoping she would become.

2012 Last Post of the Year Link

Another fairly good year, when Janey was 8.  I reflected on realizing that I was the one who knew her best, and I was encouraged by her increased understanding of our talking, and her communication, although talking wasn't how most of it was done.  I mentioned toilet training, surely thinking we were finally on our way (we aren't, and I now think we never will be)

2013 Last Post of the Year Link

A very downbeat post.  The end of last year was awful---the whole year was the start of the new reality, that Janey was getting older and things were getting tougher.  She was becoming increasingly unhappy, and I was feeling increasingly pessimistic.

And that brings us to now, 2014.  It's been quite a year, as most of you know.  The two big events were Janey changing schools and her hospitalization.  She switched this year from the inclusion classroom and school she'd been in since 3 to an autism only classroom in an autism wing of another school.  Much of that went fairly well, and in fact the time from about May-October was overall good, with Janey having a pretty nice summer and even going to the amazing Camp Fatima overnight.  However, we will most remember November this year, when Janey's self-injurious and lashing out behaviors increased to the point that she spent 24 days in two hospitals.

Where are we right now?  Right now, today, Janey is in a fairly good mood.  We are thinking her new medications might be doing something, although we've had kind of an off and on pattern of good days and not as good days.  Janey is Janey.  I think less, these days, of progress, and more of just learning how to best be a mother to the Janey I have.  She is an amazing person in so many ways.  We continue to enjoy her love of music.  Just today, we listened as she heard three new songs (we've been listening to a classic rock countdown) and sang them back, all perfectly, within minutes  She and Tony have a special morning routine any day he's not working---bacon and pan-fried vegetables all morning.  She uses the computer with ease to watch videos she likes.  She is getting tall and remaining beautiful.  Yet we are on alert all the time.  We knew at any minute, she might rage and bite us or scratch us.  We know that good days are to be treasured because there will be bad days, and they might be very bad days.  We love our Janey.  We despair over her, often, but we delight in her often too.

Here's a year end picture of my girl, and my year end wish to all of you.  Might you all have a 2015 where the happy moments outnumber the sad, and may you all have moments of true, pure joy in your special children, the moments that keep us all going.  My love to all of you.

A little Janey update

Janey has been at Bradley Hospital for two weeks tonight.  It is still hard to believe she is there, but I think we are coming to accept it and, if not exactly embrace it, to feel grateful she is being cared for at such a caring and loving place.  I'd encourage anyone with time and interest to look at this link----at the right side of that page, under the picture, there is another link that says "Read Legacy of Hope"  It's a PDF file I can't figure out how to link to, but it's a booklet that has pieces about some children Bradley has helped, along with a portrait and history of the hospital.  Janey is in the Center for Autism and Development Disabilities.  The book talks about how this section of the hospital was formed because there was almost no-place that could treat children like Janey, who were autistic and developmentally delayed, and who also had a mental illness.  It wasn't even thought in the past that could be possible, but it is, indeed.  They treat about 100 children a year in her ward, from all over the country.  I am starting to realize how lucky we are that they are relatively close and that they had room for her.

I talked a lot to Janey's social worker recently about how she is doing.  In some ways, she is doing much better.  She is lashing out at others far less, and that is great.  However, she is still doing a lot of the arm biting of herself.  That behavior has been tough for the past few years.  She said their counts show she does it about 40 times a day, which seems accurate.  She usually doesn't bite herself hard, but hard enough so she has a permanent callus on her arm.  She is also doing a lot of the screaming she does at home.  One thing I found very, very interesting and also sort of comforting is that although sometimes they can figure out what prompts the screaming, other times it seems completely inexplicable.  That is just what we had seen at home---that sometimes, there is no possible trigger we can see.

They don't yet have a timetable for her to come home.  That is hard, but I do very much appreciate that they don't want her to come home until she is ready.  I think I'd heard so many stories about people being rushed out of psych wards that somehow I had the time frame "two weeks" strongly in my head as some kind of maximum, but that doesn't seem to be the case here.

We have settled into visiting Janey every other day.  That seems to work best to balance our major desire to see her with how the visit are for her.  She always seems very happy to see us, but she is ready for us to go after about a half hour or 45 minutes.  This is partly that she doesn't want to stay in her room, where the visits take place, but I think also partly that she is eager to join into the activities going on outside the room.  The program keeps her extremely busy---there is something planned for every minute, and I have come to realize how much she needs that.

We are starting to think about how we will do a few things differently when she comes home.  I am going to work on having a schedule for Janey, and on having vigorous exercise as part of every day.  She has been sleeping through the night at the hospital, and although we aren't going to be able to completely recreate her bedroom there, which is almost all empty and not on a busy street in a small apartment, we are going to work on her sleep.  I like very much how the social worker and others at the hospital are careful to say that they know home is different than the unit---that home isn't and shouldn't be the same as the hospital, but at the same time we are able to get good ideas from them.

I worked through in my mind what my two biggest fears about this whole situation were.  One is that Janey would somehow never come home---that this was the start of her not living at home.  Talking to her social worker helped me see that is not what they are going to recommend.  Nobody had said that was the plan, but it was a fear I had anyway.  The other fear was (and is, to some extent) that this all would happen again and again and again.  I felt somehow the worse possible thing would be Janey coming home, getting upset again in a month or two and then having to go through the whole thing again.  In talking to a few people, I was comforted on this in an odd way---by learning that a lot of kids do have to go back to hospitals several times.  Not all do---sometimes it's a one time thing, but some kids going through adolescence do have a few years where they need a lot of extra help.  Somehow knowing that although it can happen, it's not unheard and not the end of the world, helped, although I'm not sure why.  Maybe it's just always better to know what might happen than to just worry about it.

I miss my Janey every minute.  I know she is where she needs to be right now, and I am trying to use this time to rest and to have a little break from 10 years of constant vigilance to ensure her safety, but I still miss her a huge amount.  She is part of us---she is a huge part of who we are as a family.  And I am gradually learning that getting help to keep her safe and happy is not going to change that.

Standardized Testing For Kids Like Janey?

I read this article yesterday  (thanks, Mary Leonhardt!) about developing standardized testing for the kids like Janey.  I hadn't really understood how the whole No Child Left Behind bit affected kids with severe intellectual disabilities like Janey.  The article explained that it's allowable for 1% of students to be tested in an alternative way---to not have to take the regular state tests, which here in Massachusetts are called the MCAS.  Most students with special needs do have to take the tests---the article estimates that only 10% of special needs students are in the overall 1% that don't have to take the tests.  I don't know officially that Janey is in that 1%, but I am quite sure she will be.  The article discusses a program being developed to modify the regular tests so even that 1% can be tested.

What do I think of this?  Well, my first impulse was that it's crazy.  No matter how much you modify a math test that has concepts on it like algebra or a English test that has you analyze a poem, Janey is not going to get it.  And more importantly, it's a waste of everyone's time and money to work on her to get it.  If you put hour upon hour upon hour into it, you might get her to somehow point to a picture relating to what the poem is about with some degree of accuracy, or parrot back an answer.  And what in the world is the good of that?  That is time and money and energy that could have been spent teaching Janey something she COULD learn---self-help skills, letters, iPad use, things like that.  My second impulse is that this is another example of people not really getting low functioning autism.  There is a larger gap between a child like Janey and some children I know with Down syndrome or higher functioning autism than there is between those children and "typical" children.  I completely believe in including kids that learn differently or more slowly, in having them take the tests with accommodations.  But learning differently or more slowly is very different than not being really able to learn the material at all, or learn it in a way that's going to make a difference long term.

Here's an example.  I have terrible handwriting.  I mean---terrible to the extent of being unreadable.  I always have, although it's gotten worse in this age of keyboards.  Now say there was a test back in my day that required writing an essay.  It would be crazy to say I shouldn't take the test because my writing isn't readable.  That is a case where an accommodation makes complete sense.  I could use a keyboard, or dictate the test, or be given a lot of extra time to try very hard to print the letters in a readable way.  And the result would be meaningful.  It would test my writing ability, without having a disability stand in the way.  (and I'm quite sure in today's world I would have a diagnosis for my inability to write legibly, or to keep an organized and tidy desk or locker)  I would be able to move forward with writing, and use it in my life.  But let's say it was Janey instead.  Janey can't read.  She can't write.  She doesn't consistently know her letters.  She doesn't know what an essay is.  She can't in any meaningful way at all even understand what would be expected for a test like this.  Now, I'm sure you could figure out a way to somehow completely modify the test so she could do LOOK like she was somehow being tested.  You could read her a story and have her point to pictures.  That might look like something useful on paper, but in reality, is it?  Does the test result mean anything?  Does it do anything but satisfy some sort of quota or make a state look good on paper?  I would say---no.  So yes, accommodate if there is something standing in the way of someone showing their skills.  But don't "accommodate" if the skill simply isn't there, and never will be, or won't be unless some huge intermediary steps are taught first.

This reminds me of all the times I've been failed by parenting advice.  Janey and kids like her, the other 1%, don't fit into the regular rules, the regular plans.  Accepting that, and doing the best we can for kids like her without forcing them to being tested in meaningless ways, is how she will move forward.

Watch this video, and read why

Here's a link to a video made by students at Freddy's school, Boston Latin...

video

And here is the amazing part.  The video was filmed by a girl in Freddy's class he knows, and the boy named Paul in the video is a close friend who is also in Freddy's class.  And Freddy never knew, and the other kids never knew, that they shared something with each other.  Each has a younger sibling with autism.  When Paul describes life with his sister (and yes, he ever has a SISTER with autism, rarer still!), it could be Freddy talking.

The video made me cry.  It made me cry for a couple reasons.  One is the truthfulness of the boys talking.  They are not pretending autism is anything but what it is, but the love they have for their sisters is so very apparent.  They are honest about how hard the crying is, the running away---the same things Freddy knows so well about life with Janey.  It also made me cry because I felt less alone, in a way that's a little complex.  I know there are other families out there with autistic children, and autistic girls, but until seeing the video, I didn't know that Freddy knew others like himself.  He didn't either.  Boys his age don't talk about the challenges of life with an autistic sister on a daily basis. That is normal.  But now Freddy knows, and I know, that someone else, actually quite a few someone else's, that he knows well, gets it.  Gets it by living it.  When Freddy got home and I showed him the video, I was crying very, very hard, and not quite even understanding myself why I was, but I think it's the joy of connection---of knowing that you aren't alone, a feeling you all have given me, and now maybe Freddy can feel too.

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.

Autism in public places

This article  ( link ) is getting a lot of buzz today.  It talks about a huge issue in autism---how do we balance our childrens' rights to be out in public with the rights of those they might be somehow disturbing?

My feeling is that common courtesy on both sides goes a long way.  I would not take Janey to a quiet restaurant or movie, because she would not be quiet.  If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise.  That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants.  However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.

I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely.  One was on a commuter rail  ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ).  Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.

However, there are many, many times Janey has been treated with kindness and understanding.  As she gets older, people are more able to see she is different, and they see that we are all trying hard.  Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost.  She usually gets a lollipop at the register, and she gets a lot of smiles.

Most of the world, though, is in-between.  There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point.  Nothing in this world makes me more uneasy than being the center of attention or being singled out.  But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises.  She cries sometimes.  She jumps around.  She talks oddly and repeats phrases.  If that bothers people, then I do have a problem with that.  None of those actions of hers hurts others.  None of them are illegal, or keep others from doing what they need to do.  I am not going to hide her because she might make someone uncomfortable.

The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation.  It told of a man with autism that would eat food right out of the hot food bar at Whole Foods.  That is a health and safety issue, and a rudeness issue.  If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave.  I don't expect exceptions to the rules for Janey.  She needs to learn what she CAN learn, so that she CAN be out in public.  But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.

In a perfect world, everyone would be striving to be as kind and fair and understanding as they could.  That's not this world.  I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others.  It's not easy, but then again, not much about this autism parenting gig is.

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.

Being a Skeptic

I wish I wasn't a skeptic.  But I am.  I don't take much at face value.  Once I got a big pile of Skeptic magazines at a thrift store and read through them all.  They depressed the heck out of me, but I couldn't stop reading.  The favorite phrase of skeptics is "extraordinary claims require extraordinary evidence", and I have to admit I do agree with that.  If you are telling me something that is hard to believe, I need very strong evidence to be convinced.  I wish I wasn't like that.  I wish I had more faith.  I wish I could believe more of what I hear without that voice in my head saying "I think there's more to this.  I'm not sure this is true.  I need to learn more about this before I accept it".  But I can't.

Lately, I am reading more and more about people with autism who are non-verbal or have very limited verbal abilities using typing to show that they have far more going on in their heads that anyone would have guessed.  Now, I do believe that Janey, and a lot of kids, have far more in their minds than they can express.  That is part of autism---that what a person with autism knows is not always easy to get at.  And I know that sometimes with Janey, she needs a hand over her hand to get her started in picking the right answer.  I also know it's EXTREMELY hard, when I do this, to keep from nearly unconsciously guiding her to the right answer.  Sometimes I'm almost sure I'm not, but then I realize I am.  Then I step back and make sure what I am doing is just a very light touch to get her started.  I have started closing my eyes when doing this, to keep from being able to guide her.  Or I put up something between me and the screen she is seeing, to make sure I don't guide her.  And when I do this, she gets a lot less answers right.  I don't EVER want to delude myself into thinking Janey can do things she can't.  This is because that does her a HUGE disservice.  I value Janey for who she is, not who I wish she was.  

I know this is a very touchy area.  And I know that some people with autism type independently, and I know some people start out with what is called Facilitated Communication (read about it here) and then move on to typing on their own.  And I think it's possible that some people communicating through FC (as it's nicknamed) are truly typing their own thoughts.  But I am skeptical.  Saying I am skeptical means something hugely different than saying I don't believe people.  It means I want proof.  I think in this particular situation, proof is something hugely important.  It makes a huge difference in Janey's life.  If people with autism that appear to be even lower functioning than Janey are able to go to college and write poetry and so on using FC, then I need to rearrange my thinking about Janey.  But I am not going to do that on faith, and the history of proving FC is true so far is pretty checkered.  

This article is what got me thinking---it has a lot of interesting information.  (see it here)

I don't ever want to say that I don't believe people.  And that is not what I am saying.  I am saying that I am a huge stakeholder in the task of finding out exactly what people with autism are capable of.  I don't just have an academic interest.  I have a heartfelt, extremely personal interest.  I don't wish to tell anyone else what to do, what to believe, what to think.  I would never want to do that.  My work, my life's task, is to let Janey be what she can be, what she can truly be, and to celebrate her for that.

The worse screaming night ever

Yes, indeed, last night wins the price, and the competition was stiff.  In terms of intensity, it was the worse screaming night ever.

The last few days have been building up to this award-winning night.  Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday.  Yesterday morning, she was tough but not impossible.  I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively. 

I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool.  The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time.  Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.

When Tony got to the school, Janey was very happy, as she was outside running around.  But he said before they even reached the door of the school, she started crying.  And she screamed all the way home in the car.  Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken.  He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.

I heard Janey in the driveway the minute they got home.  She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming.  She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying.  I mean screaming, the kind of screaming that would not be at all out of place in a horror movie.  Absolute all out no holds barred screaming.  So loud that talking was impossible.  

While she screamed, she ate.  She ate everything Tony cooked in a vain attempt to calm her down.  She barely stopped screaming while swallowing.  Once in a while, she spiced up the screaming with a screamed phrase.  Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.

At one point, we asked ourselves whether we should go to the emergency room.  It was that bad.  And we might have, had we thought it would do a single bit of good.  But it wouldn't have.  There isn't anything they could do that we couldn't do.  That is the sorry state of mental health services for children in this country.  Here's an article which was in today's paper that addresses that somewhat---  link.  If Janey had been physically sick, we would have had access to the best care in the world, minutes away.  But for her kind of sick, mentally sick, there is no care.

After hours, Janey screamed her way to sleep.  She had calmed down a tiny, tiny amount before that.  She is still asleep, and I hope with the strongest hope possible today is better.

So---what caused this?  That is something we will probably never know.  Janey can't tell us.  I doubt she knows herself.  My theories?  Very few.  One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount.  I think she might be holding her urine at school, not wanting to wet herself.  Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and  with the relative lack of toilet training skills and talking skills, that isn't something that she does easily.  Two of the nights, she used the potty, last night, she wet in her pullup.  I really don't know if that's it.  She could be feeling overwhelmed about something.  She could be hearing sounds in her head.  She could be on the verge of a breakthrough, as   was commented here yesterday.  She could be physically sick, although I don't think so.  She could be any number of millions of things she has no words to tell us.  

It breaks my heart to have Janey so sad.  It also breaks my heart that the boys were not able to  have any semblance of normal family life last night.  William had his first college interview.  That would be a great thing to be able to talk to him about, to celebrate.  But we heard little bits and pieces between the screams.  That isn't fair to William.  But not much about this whole gig is fair.  Not to us, and not to Janey.  Not to anyone.

A link that will make you cry

Here is a link about one of the young children killed in Newtown.

Click here

More than anything else, this put the horrible events of that day straight into my heart, and left me gasping for breath through my tears.  I think about that precious little girl, and I see Janey.  The fact that she was in the class she was making me think the school must have been an inclusion school.  I think of Janey, in a situation like that, unable to follow instructions, unable to hide and be quiet, unable to understand in any way what was happening---not that any child could, but I think of her fear of loud noises, her reactions to others being upset, her dislike of the school routine changing.  I think of all that, and I can barely take it.

We all depend on others.  We depend on everyone who keeps our world safe and operating.  But some of us depend more on others.  Janey does, and that means I do too.  I depend on anyone who is with her when I am not.  Janey needs supervision constantly, just to stay out of danger, literally, to stay alive.  Without someone holding her hand, she might run into traffic, or wander away.  Without someone taking the burners off the stove, or locking cupboards or monitoring hot water, or making sure she doesn't break glass or choke on things she puts in her mouth, we could lose her.  I live with that every day.  I trust the people that care for her at school, and my immediate family.  Other than that, she is with me, all the time.  I imagine the parents of Josephine Gay knew that feeling all too well.  They sent her that morning to a place she'd be safe and cared for.  And evil came that day, and took her life, and the life of other precious children.  In a way, that day reminded us all that we live with an illusion of safety.  Those of us with children like Janey have known that for a while.  I wish no-one else ever had to learn that horrible lesson.