Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

A day I felt lucky

I felt lucky today for two very different reasons.  The first was because of an act of kindness and help, and the other was by comparison, after reading a book that made me realize that things could be worse, much worse.

The kind act was Janey's teacher from last year offering to watch her this afternoon so we could have a break.  Not only did she watch her, but gave her a wonderful time---a long time at a playground, and then a visit to the street fair on her street, complete with a climb on a fire truck and a ride in an old fashioned paddy wagon!  When we went to get Janey, she was running around with a couple kids who were playing football in the street.  A few kids from her school were about, and it was like a scene from a movie of a neighborhood good time, and Janey was part of it.  Janey looked so happy!  She had been reluctant to say goodbye to us when we were leaving, which is fairly new, but is happening a little more lately, but once she saw the playground, there was no looking back!  Tony and I went with Freddy to a nearby restaurant and had a leisurely meal.  None of us were sure if just the three of us had ever done that before.  It was fantastic being able to just concentrate on Freddy.  A little respite goes SUCH a long way, and we are so thankful for it!

The book I read was January First, by Michael Schofield.  It's a memoir about a family dealing with their daughter's childhoood onset schizophrenia.  January was diagnosed at the age of 6, after years of seeing hallucinations and trying to injure herself and others.  She spent time in several unhelpful psychiatric hospitals before finally getting the care she needed at UCLA.  I couldn't believe how hard it was for the family to get help, from anyone, until things got so bad it was pretty much life or death.  Janey is certainly one of the tougher kids out there, but compared to what these parents went through, she seems almost like a piece of cake.  Almost.  It helped me get some perspective to read the book, and also made me understand more why people have said to me quite a few times that they are glad I write about bad times with Janey as well as good.  I truly appreciate the honestly this book showed.  I looked up the author's blog, and saw January is doing very, very well now, which made me so happy, but then I was quite sad to read that her younger brother, who is just a baby in the book, now has some severe mental health issues of his own, including self-injurious behavior.  That made me reflect on the luck of having Janey be the youngest by far in the family, and think more than ever how lucky we are to have her two remarkable brothers.

Of course, Janey doesn't take a break from being Janey when I am basking in good feelings.  She was tough for a while tonight---arm biting, screaming, lots of behaviors out of the blue.  But I managed to stay calm and relaxed, for the most part, and she went to sleep pretty nicely.  Last night, she slept ALL NIGHT---for the first time in I think at least a month, which might also have helped today feel more manageable!  

I am lucky in many ways, and it's important that I remember that.   It's easy to forget that, when things seem dark, but it's true.  Thanks to all you that make it true.

Daryl Hannah?

I'm writing this just after reading this article and a few others about Daryl Hannah (article).  It's my gut reaction, so it's not polished or heavily thought out, but I felt sort of compelled to write about this while it's fresh in my mind.

What was my reaction?  First, it was, well, sort of an anger. Not anger toward Daryl Hannah, but anger at how revelations like this change people's perspective of autism, and add to what much of the public already believes---that autistic people are very bright, that they have amazing abilities, that people can be autistic and you'd never, ever know it unless they told you, that girls and women with autism in particular are on the high end of the spectrum---things like that.  And all those things might be true, for a small percentage of people out there.

And then there's Janey, and the many children and adults with autism like her, the ones on the low end of the spectrum.  They don't get the press, because they don't grow up to be celebrities, they don't have astonishing abilities, they don't get "cured".  They have a serious, at times heartbreakingly serious, lifelong disability.  Maybe I am not using the politically correct terms here, but I am speaking from the heart.  With Janey's type of autism, you would not ever be able to star in movies, to live on your own, to be politically active, to have dated JFK Jr, to be Daryl Hannah.

I am not saying Daryl Hannah isn't or wasn't autistic.  I have no reason to think she is lying, and I don't think she is, as she sees it.  But this illustrates the problem with having one word for autism, for conditions that range from nearly invisible to kids like Janey, to kids lower functioning than Janey.  It leads, I think, to a lack of services.  If the public thinks that most people with autism are able to do the things that someone like Hannah can do, they aren't going to think they need the kind of help that Janey and the other Janeys out there need.  I think that's why it's so hard to get good respite, good sheltered housing, and good recreational opportunities.  If you think people with autism are all like the ones in the public eye, you'd be justified in thinking they don't need our help that much.

Part of my mission in writing this blog is to give a little bit of a voice for Janey, and other kids with low functioning autism.  They may not be celebrities, but they are worthy of our love, our attention and our help.

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.

Routines...Once again, I was clueless

If Janey ever does learn to talk well, I imagine one of the first things she'll have to say to me is "Why did it take you so darn long to figure out basic things about me?"  I don't know if Janey's personality is showing itself more strongly lately, or if I'm just paying more attention, or what, but this week, I am realizing that Janey really does like routines.

You are probably saying to yourself "Is this woman clueless or what?  Her daughter is autistic!  Don't all autistic kids like routines?"  Well, probably most of them do.  But with Janey, it's not always easy to tell.  Her problems with communication often leave us completely not aware what she is upset about.  The problem is complicated by the fact that Janey has a fantastic memory for small details.  That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines.  Another barrier to me figuring this out---Janey is not at all bothered by new situations.  I guess, thinking about it, that makes sense.  Brand new situations don't HAVE a routine.  This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year.  I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.

A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony.  We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face.  I decided to skip brushing hair.  Her hair looked okay, and she hates it being brushed.  Her long hair is one thing I'm probably very selfish about.  I don't want her to have short hair.  I love her long hair, and I think she likes it too.  But brushing is a battle.  However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me.  I had skipped part of the routine.  I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same.  But screaming or not, she felt it needed to be done.

Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it.  It was a rare attempt at restaurant eating, and by reports, not that successful.  She has some fries, but quickly got restless and they had to take most of the food home.  However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not.  Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.

I am sure there are hundreds of other routines I'm not aware I'm supposed to be following.  I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing.  Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk.  But so many things are out of her control.  It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't.  I could avoid the situations that would set up the need for a routine to be followed.  I would not be as surprised by her screams if I knew I wasn't doing what she thought I should.  For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.

And now, for a bonus, a picture from Janey at school today!  It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment.  Thanks, Amy!

Puzzling out the rituals

After recently figuring out what Janey really meant by her common phrase "Snuggle on Mama's bed" (which I wrote about here), I've been more alert to other rituals or OCD-like needs that Janey has.  It's tricky to figure out, as she talks so little.  I think with many of the rituals, she just goes ahead and does them, quietly, because it's too much work to talk about them and because she's not driven socially to share them.  Others, though, involve us, and I'm realizing much of her speech she does have might actually be in service of trying to get us to understand those needs.

The big breakthrough this week involved how Janey is often bringing me clothes, and saying "Put on shirt" or "Put on pants".  This almost always happens when we get home from someplace, like school or shopping.  I figured, for years, she was asking me to change her clothes, and I usually did, because I try to do what she asks if there's no reason not to.  But often she would freak out as I tried to do this, get hysterical, take off all her clothes, throw the clothes around, and I'd say something like "Fine!  We won't put that on!" and think to myself "Why is it always this way?  Why does she ask for things she doesn't want?"  Lately, though, she's been more often bringing me a piece of my clothing.  I assumed she was confused, and wanted to put that on her, and I even did a few times, which she sort of half seemed to accept.  FINALLY, it struck me.  When she brings me clothes, she wants ME to change my clothes.  It's something I often do after coming home from someplace, a lot because I'm a slob and have spilled food on myself or gotten my pants muddy or something.  I guess in her mind that became a ritual---Mama changes clothes when she gets home.  When I didn't, I wonder if she felt uneasy---is Mama leaving right away again?  Why is she not doing what she is supposed to?  And gradually, she realized that some clothes were mine and some hers, and tried in her best way to show me what she meant by bring me my clothes.  This week, as soon as she brings me any clothes, I go change my clothes.  The look on her face is priceless.  It's so wonderful to see her realizing I finally understand.

The next step would be to do what she needs me to do before she asks.  I've tried to do that with the Mama's Bed issue.  Tony has been picking Janey up from school, and when I know they are about to get home, I get on my bed, so when she walks in the door, I'm where she needs me to be.  This has greatly reduced her screaming right upon getting home.  I might start to try that with the clothes.  When we get home, I'll let her know right away I'm changing my outfit, and see how that works.

There's lots of littler rituals we've noticed.  When we get in the car, Janey has to push on the central console area between the front seats.  When she walks by a certain bookcase, she touches the concrete block we used to make it.  She doesn't eat food until someone else touches it to their lips (for the first bite), which I think came from when she was a baby and I would test how hot or cold food was that way.

I can't imagine how it would feel to have certain things that need to be done a certain way when it's so hard to communicate that.  There have been times in my life I was quite affected by OCD.  It's been a long time since it's been a problem, but I well remember it, and how extremely strong the feelings are that things MUST BE DONE RIGHT.  I'm sure at least some of Janey's tantrums come from us just not getting what needs to be done.  I am not sure what to do with this knowledge.  I am sure there's medication she could take, but I am not sure I'm ready for that step.  There are cognitive ways to deal with OCD, but those would be beyond Janey.  I am trying to talk to her about her feelings in very simple terms, just saying things like "It's scary when Mama isn't where she's supposed to be, isn't it?" and I get that response---that look of surprise and thankfulness.  I think for now I'll just keep observing, and trying harder to figure out what Janey is telling me, even if she doesn't have the words to really explain it.  I think it's more important now to establish her trust by showing her I do understand than it is to try to overcome her rituals.  We'll keep on truckin'---keep on trying to figure out my puzzling girl.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

True Inclusion

I've read lots of stories about inclusion classrooms that end something like this..."As I left the room, I said to the teacher 'But you told me this was an inclusion class!  I didn't see any kids in there with special needs!' and the teacher smiled and said 'But there were, and I'd challenge you to figure out who they were!'"  The point of the story always is that we have so many preconceptions about children with special needs, but in reality, they are JUST LIKE the rest of kids, and if you just put them in a classroom with typical peers, they will blend totally in!  Well, if you visited Janey's classroom, unless you are unusually clueless, you would not tell that story.  Janey doesn't blend in.  She isn't exactly like all the other kids, unless you are looking at a still photo with one of her smiling face poses.  It would only take a minute or two for anyone to figure out that yes, she's one of the special needs kids.  And that is what I consider true inclusion.

I've been thinking about this a lot the last few days, because of my happiness over how the school year is starting with Janey, and how in general her remarkable school and teachers handle inclusion.  Here's a few examples----

Last night was the curriculum night at school.  I always go to that night, and although I've never felt unwelcome, I've often left feeling sad.  This is not because of anything anyone did wrong, but just because the main line curriculum is not something Janey can access much.  The classes she's in consist of about 25 kids, of which around 4-6 are on IEPs (I don't know the exact number, because that's not my business, and I am sure there are some kids that DO blend in), so most of the class is working at a normal grade level.  I hear about all the reading and math and history and science and testing the year will bring, and I am very happy she's going to a school that teaches at the high level it does, but I am left feeling a little empty---wishing Janey was going to be learning those things too.  When Janey's teacher asked me if I was going last night to the curriculum night, I said "Um, maybe.." which she knew enough to know meant no.  And she said "Please come---we are personalizing the night"  I went, because I was intrigued, and indeed, that is just what they did.  Each parent sat at their child's desk, and each place had a decorative guide to exactly what that child's curriculum was like, personalized.  We all got a chance to read that, and then just to talk to the parents of the kids our kid sits with.  It was wonderful.  I love hearing about the other kids in Janey's class, and I love talking about Janey.  In the background, there was a slide show of pictures from that very day in class, showing what the kids were doing, and I was able to see Janey right there with the rest.   The teachers were available to answer questions, and I left feeling very, very happy.

A piece of inclusion that often gets lost in the shuffle is the regular education kids in the class.  It's very important to me that they also benefit from inclusion, and at Janey's school, I feel they do.  The extra resources that having a lot of kids with special needs around bring in benefits all kids---there are speech therapists, OTs, PTs and lots of other helpers in and out of the class, and also two teachers and an aide, and often a student teacher.  It's no coincidences that for several years in a row, the Henderson School has been the top performing school in Boston on the state testing.  But I think it's more than academic.  The kids learn to accept that there are those among us who need more help, and they learn to give it, and to feel good about themselves for giving it.  There's a new girl in Janey's class who took to her immediately, and who Janey has taken to also.  She is treating Janey like a friend---playing little games with her, chasing her, sneaking up behind her and saying "guess who?"---all that.  For a little bit, I wondered if she somehow hadn't noticed that Janey spoke very little, if she didn't see her autism and intellectual disability.  As if she had read my mind, the girl stopped me as I was leaving Janey in the room the other morning and said seriously "I've only been at this school a little while, but I know how things work.  I have a cousin like Janey"  Somehow, that filled me with an extreme happiness.  She was telling me that she liked Janey WITH Janey's needs---she was aware of them, but Janey didn't need to be "normal" to be worthy of friendship.  That is an attitude her school promotes, and it's a crucial part of true inclusion.

I often wonder how much Janey understands about herself.  Does it matter to her that she be with all kinds of kids, that she do "normal" things?  Would she be just as happy in a separate classroom?  I partly answer that by seeing her after a day of summer school, which is separate.  All reports were she had great teachers this summer, but she didn't have the spark, the joy, that a day at the Henderson gives her.  And last week, I saw how much she does get when she had some homework---very appropriate homework she could do.  When I told her it was time to do homework, and we sat down at a desk to do it, she was thrilled.  She has heard the boys talk about homework a million times, and suddenly---it was her turn!  She did it willingly and to the best of her abilities.  I think being in a classroom with regular routines---saluting the flag, reading groups, recess, homework---all the things we remember from school---is very satisfying to her.

Inclusion is not easy.  This is the 25th year the Henderson School has been inclusive, and I am sure there are still things everyone is learning.  But done right, it doesn't have to be a situation where success means you can't tell who the special needs kids are.  It can be a situation where the very fact that some of the kids have extreme special needs is a boon to everyone.

Decoding "Snuggle on Mama's Bed"

"Snuggle on Mama's bed" is the phrase Janey uses far more than any other.  She probably says it 20 or 30 times a day.  It's often the first thing she says to me after we've been apart, the last thing she says to me at night, and the first thing she says to me in the morning.  So that's why it's a little strange that it's only the past week or so I really figured out what it meant.

For years, I thought the phrase meant what you would think it would mean---that Janey wanted me to snuggle with her on my bed.  I would do so when she asked, if at all possible.  Sometimes it seemed to calm her down, sometimes not.  But oddly, she'd often ask it when we were already snuggling.  Or she'd ask it, snuggle with me for a second or two, and then jump up and go on her way.  When she did this, I'd get up too, and go about my business, only to have her come back a minute or so later and ask the same thing again.  We'd sometimes go through this for 10 rounds or more, and Janey would get very annoyed if I resisted the constant demand for what I saw as second-long snuggles.

What led me to figure it out was noticing that more and more, Janey wants physical things to be a certain way.  Tony, Freddy and I actually all noticed this separately, but didn't talk to each other about it until one day late in the summer.  Janey does a round of the house, putting things as they should be.  The door from the living room to the bedroom must always be closed.  The Wii remote that we use for Netflix must be on its back, not on its side or upside down.  The blankets on the edge of the couch must be in a certain position.  Any room that is being used in any way must have a light on.  I could go on and on.  Obviously, there's a touch of OCD there (something I am far too familiar with), but it took us a while to see as Janey doesn't seem to get upset by things out of place---she just fixes them. Or does she?

I wonder now if many, many of Janey's long crying spells have something to do with something that is not in the right place, that is out of place and can't be fixed by her.  And that is what I finally figured out about "snuggle on Mama's bed".  It doesn't mean she wants to snuggle with me.  It means she wants me on my bed.  She wants me in what she sees as the "right" place.  And she gets upset if I'm not there.  It's a little flattering, actually, that I am more important that doors or remotes.  She needs to know where to find me, if she needs me.  She doesn't like me to be unpredictable.  I'm not sure what it says about me that being on my bed is the right place for me, but OCD type thoughts don't always make any sense.

I tested this theory a couple ways.  First was just talking to Janey about it, saying "You like Mama to stay on her bed when you feel a little nervous, don't you?  That's why you ask me to snuggle on Mama's bed, to get me to be there?"  The look on her face said a huge amount---a mixture of surprise and extreme relief.  I then said "You are upset now, so I'll get on my bed for a while so I'll be there if you need me"  Janey came over to me, tapped me, went to the living room, came back in a few seconds to make sure I was there, tapped me again---over and over and over.  She stopped crying, she looked hugely relieved---we were both very happy.

However, just understanding Janey in this way doesn't really create a solution.  Obviously I can't spend every single minute on my bed (although sure, there are days I'd go for that)  And if I am alone with Janey and she is in a very upset mood, I have to be close to her to make sure she's okay---I can't be on my bed while she runs around.  But in limited cases, like when Tony is also home and she is having a fit, I am going to, at the first request to snuggle, just get on the bed and stay there for a while.  When I get up, I'll tell her.  I'll try to make that little part of her world predictable, for now.  I'm working without a map here.  I doubt there's anything in the parenting literature that tells you what to do with a minimally verbal, intellectually disabled autistic nine year old who is showing scenes of OCD.  Am I doing the wrong thing to do what she wants?  For right now, I'll risk it, partly just to show her I do understand.  And we'll go from there, playing it by ear, as life with Janey so often demands.

YesNo for iPod --- discovered in desperation!

Janey's crying was less today, but this afternoon started to return.  One thing we always worry is that Janey hurts physically someplace---that she has a headache or a stomach ache.  We were trying to ask her that, which she sometimes answers.  We've asked it by asking her "Do you need hurty medicine?" (meaning Tylenol) which she will answer.  Today, though, she was screaming so much that she couldn't answer, and I was hugely frustrated, thinking that there should be a simple way for her to just push a button to say yes or no.  I got on the app store looking for such a thing.  I looked briefly at hugely expensive speech apps, knowing I couldn't afford them and certainly couldn't learn them in a few minutes.  Then I found this app

Answers: YesNo HD

It was $3.99, and it looked very easy and like it would do what I wanted---just bring up a Yes/No screen.  I bought it in a frenzy, opened it and found the default setting was indeed just a yes/no answer.  I went back to Janey, asked her if she needed hurty medication, and showed her the screen, quickly hitting yes and no to show her how it worked.  She immediately hit the "No" button.  I then asked her a few other questions to see what she'd do, like did she want a hug, did she want bacon (which Tony was in the middle of making), etc, and she answered "yes".  I asked the hurty medicine again, and she said, again, "no".  So we had our answer!

It always feels weird to me to use software like that when Janey CAN talk.  But she can talk in certain contexts, and she also seems to have a very hard time with "no"---she answers yes or nothing at all.  I often find myself holding out two fists, labeled one "yes" as I wiggle it and then the other "no" as I wiggle it, and letting her pick a fist.  That seems to work for her.  I could still do that, but this seems like a more independent way for her to talk.

Looking at the software a little more, I saw you can make other easy choices available.  I quickly took pictures of Tony and of me, and gave her a "Mama/Daddy" choice button.  Just now, she said she wanted to cuddle.  We usually assume that is with me, but we gave her the choice and she picked Daddy, so that is what they are doing.

Janey's teacher this year and her ABA specialist are going to work on augmented communication, and I am very excited about that.  I think it might be a huge help to Janey, and something that might ease her frustration.  She is still crying today, but for about 10 minutes after first using the Yes/No, she was quiet and happy.  I'm going to try to add some more choices soon.  Even if it only helps for little bits of time, that's better than anything I tried yesterday.

Crying----Why? What To Do?

Janey had a great day at school on Friday.  Today, she went to the "Treat House", the respite house, and went apple picking.  She was cheerful when we dropped her off and when Tony picked her up, and he didn't hear any reports that she was upset there.  However, a few minutes after getting in the car, she started to cry.  She cried all the way home, and kept right on crying.  She cried, screamed and cried, from 4 - 6:30.  As of this writing, she's falling sleep.

I wish I could truly describe what spells like this are like to someone who hasn't seen one.  It's hysterical crying, the crying of despair.  She hears what we say, based on an occasional echolalia word, but nothing we say helps.  Nothing we do helps.  We have absolutely no way of knowing what's wrong.  She doesn't say.  We can guess, and today's guess was that she was tired, as her sleep has been awful.  Last night, she was up from about 1 am on.  Not crying, but awake.  For much of that time, she lay next to me, so wired that she didn't even really rest her head on the pillow.  And then she goes off, apple picks, comes home, and of course she is tired.  But she doesn't sleep, and that doesn't always cause crying.  Is she hungry?  We offer her food, she might eat a bite or two, but then she continues the crying.  Her face is red, tears stream down.  She is desperately unhappy, and I can't help.  No-one can help.

At one point Tony took Janey in the back room to give me a mental break from the crying.  Janey screamed for me, and Tony said she needed to calm down first.  She got control for a second, said "I feel better" and he let her come to me.  Within seconds of leaving the back room, she was screaming and crying again.

I think the source of her sadness is internal.  But she doesn't have the words to explain that to us, or if it's not internal, to explain what makes her sad.  The combination of retardation and autism and probably a mood disorder leads to a situation without a solution, or one that I can find.

I am glad school is happier for her, but of course that is also hard for me.  I can't recreate school at home.  Home should be a happy place for her, but I feel like home is where she goes to fall apart.

Lately I am feeling out of ideas.  The crying, the lack of sleep---it's worn me down.  I am so happy school has started, but I feel guilty in that happiness, because I am sure it's almost more about just getting a break from Janey than being glad she's learning.

What do you do, when you've run out of ideas?  I don't know.  I've read some scary, awful ways people have dealt with that feeling lately.  Don't worry.  I would not ever, ever go there. But more and more, I am starting to see that long term, Janey might need more help than we can give her, as a family.  Getting that help is not easy.  It's very, very hard.  But so is the way things are right now.   I've always gone with hope as my answer---hope that tomorrow, Janey will be happier, that she'll be back to one of the delightful stages where life with her is wonderful.  Tonight, I'm having trouble drumming up that hope.  I'm down to hoping FOR hope to come back, tomorrow or soon.

First Day of Third Grade

The day you think will never actually arrive arrived yesterday---the first day of school.  I always wonder how much Janey realizes what the day is going to bring.  I talked it up for a few days, and she would repeat that it was going to be the first day, but I think she still is always a little surprised when we show up for school.  There's the confusion of summertime school, and there's the confusion of I think her not being totally aware of what tomorrow means, or even today.  Whatever it was, Janey seemed a little stunned to actually be at school at first yesterday.  The first day always features parents and kids gathering at the big inner courtyard her school has.  I figured out it was my 14th first day of school at the Henderson Inclusion School, so I have the routine pretty down!  It's a great feeling, that first day, with excited and nervous kids and parents.  Janey was overwhelmed at first, but then started her running around.  Then she heard the music, being played by part of the arts education team at the school, and she was drawn to it to dance.  I noticed that not another kid in the whole school was over next to the speaker dancing.  Any music at all draws her in, from loud banging stuff to the subtle background music at stores.  The music seemed to settle her down, and she looked happy for the first time in the morning.

And then, her teacher for this year spotted her, Ms. Gailunas, or, as we sometimes call her, Amy.  Amy has known Janey since before she was born.  She is the first person ever I discussed my thoughts with about Janey possibly being autistic.  She is the teacher I credit in a huge way with starting William on the path he is on, turning around his school career and helping him in so many, many ways.  She gave Freddy a delightful 2nd grade year.  And now, she is teaching Janey!  And she is EXCITED to do so.  That's what kept hitting me yesterday.  With how tough the summer was at a lot of points, I'd accept a teacher just doing her job, a school just doing what they are required to do to teach Janey, to have her there so we get a break.  But with the Henderson School, I get so much more.  I get teachers like Amy, excited to see what they can get Janey to do.  I get a whole staff of people that know Janey, many of who knew her from the start of my pregnancy with her, and who love her and are interested in her.  I get school and after school that gives Janey so much more than I could ever give her at home.  I am supremely lucky with her school.

And so Tony and I left without nervousness, knowing Janey was in very good hands.  We went out to lunch, and then we came home and collapsed into a nap.  It was a long summer, and an especially long last few weeks, but as September has always felt to me, the day felt like hope and new beginnings.

"They grow up so fast!"...or not

William has been at college for a week now.  I miss him more than I even thought I would.  It's a strange feeling to have someone you love around every single day for almost 19 years, and then, suddenly, they are gone, and it feels like, well, that's that.  I know he'll be home for vacations and summers, hopefully, but he is the opposite of homesick.  He loves college extremely much, based on the few lines I've heard from him.  And I am very, very glad.  That is how it should be.  Tonight, though, I was feeling sappy and thinking things like "it's so true what they say---they grow up so fast!"  I was thinking of posting something like that for my status on Facebook.  But then I thought about it.  They don't all grow up so fast.

Janey is growing physically, of course.  She is getting older.  She will be a teenager in 4 short years.  But she grows in other ways very, very slowly.  Many things seem at a standstill often.  Her toilet training is improving, but over years, not months or days.  Her speech in many ways ebbs and flows, but doesn't really get better.  She can do things she couldn't a few years ago, but still, in many ways, she's a toddler mentally and developmentally.

Tonight when Janey was crying, I got her to sit on my lap.  I sang to her, smoothed down her hair, snuggled her.  It felt a lot like what you do with a baby.  It was wonderful.  It was a rare time I was almost glad I still have a little, little one.  That feels like the wrong thing to think.  It's of course not that I don't want her to mature.  If she was breaking away from me, if she was starting the road to someday being like William, gone away and glad to be so, I would be thrilled, because that is how the pattern of life goes, usually.  But I don't have a choice about it, and sometimes, with accepting that comes a kind of peace, a kind of happiness that in many ways, I have a child who will most likely be a child forever.

There are many of us out there, I realize more each year.  There are a lot of parents who have a child for life.  They watch other kids breaking away, growing up, moving out, getting married, having grandchildren for them.  They often have other kids doing just those things.  They watch with a mixture of feelings.  There is jealousy, yes.  I think most of us would admit to some of that.  There is envy, and there is astonishment, that for so many children, becoming an adult happens so easily, seemingly without effort.  But there also comes, with time, a feeling that we are living a separate but not inferior type of life.  Our kids are not on the same tenure track.  They are living a parallel life path, one that doesn't have a childhood expiration date.  And over the years, slowly, that becomes its own reality.  I am not there yet.  I still wish, sometimes, or maybe a lot of times, that Janey was following the more typical path.  But tonight, as I miss my oldest, I treasure my youngest, and I am glad, for flashes of moments, that she does not grow up so fast.