Catching Up

 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.

One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we had go to through for this.  He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem.  It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process.  We were adviced just one parent should be the guardian, in most cases, so we picked Tony.  It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.

Another happening---Janey finally started getting social security.  It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot.  We are getting retroactive payments back to her 18th birthday, too, in several installments.  We are using her money for the special food she asks for, and for clothes and pull-ups and so on.  This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all.  But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.

We are currently in the middle of yet another endless process---what is called the 688 application.  It's the process for getting Janey services when she turns 22, in less than 3 years now.  It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood.  It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us....  I simply can't understand it can't be an easier handoff from school to adult services.  And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.

This ties in a bit to one good development.  Janey has started an after school program.  She hasn't been in one for many years, since she was about 8.  This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22.  It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way)  On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am!  It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us.  From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22.  We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged.  We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!

We are very happy with Janey's new teacher for the regular school day, too.  Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie,  is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.  

Over Thanksgiving weekend, Janey has a tough time.  We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that.  Whatever it was, she cried and screamed and was unhappy all day long for four days or so.  It was a horrible flashback to the past, when that kind of time happened so much more.  But it was also a good reminder of how far we have come, that we rarely have that kind of time any more.  Most of the time, Janey is pretty content.  She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over.  Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4.  We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.

With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to.  Janey isn't into Christmas.  She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings.  I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s.  It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us.   I hope that all of you enjoy the holiday season in a way that works for your family.  I hope 2024 is a good year for all of us.  Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond.  Happy Holidays!  Merry Christmas!  Happy New Year!

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Autism and Routines, with thanks to Naoki Higashida

I recently got a chance to review the latest book by Naoki Higashida, a Japanese man with autism who writes by means of pointing to letters on a letterboard.  I'm ashamed to say I've owned "The Reason I Jump" for years, and hadn't read it until now.  When I got the new book, "Fall Down 7 Times Get up 8", I read them both.

The books were not what I expected.  They were far more helpful than I'd expected, and more nuanced.  The author is very honest, and the books are far from all positive---there are many parts of being autistic that he says are very painful.  He sounds much like Janey in terms of his verbal speech and his level of independence.  That doesn't mean that she is like him, any more than I'm like others who speak at my level, but it's a chance to get a glimpse into the mind of someone with more insight into Janey's mind than most.

I won't go over everything about the books---you can read them if you want to.  But what I want to talk about is what I learned about autistic routines, both from the books and from applying what I read to what I've seen in Janey.

Higashida explains (and I'm paraphrasing here) that routines are not really a positive or negative thing.  It's not that they bring him pleasure or make him upset.  It's more than they simply MUST be done.  They are like breathing or eating.  Once something is established as a routine, it feels essential to follow the routine.  If someone tries to prevent this, it's extremely upsetting---again, not because he enjoys the routine so much, but because it feels like something vital is being stopped.

From this, I thought about how routines get established.  We establish routines all the time, often without realizing it.  For example, if Janey goes onto the bed and wets it during the day, our next part in the routine is to get upset, to remind her we always go in the potty, and to change the bed.  By following our parts of the routine, we further set it in place.  I can see how that goes.  If Janey feels the need to urinate, she starts her part of the routine---go to the bed.  We follow our parts---get upset, remind her, change the bed.  The routine to her isn't what it is to us.  She doesn't see it as "IF I wet the bed, THEN they will get all upset, SO I shouldn't wet the bed"  She sees it as a series of events that are linked.

Getting ice cream---one of the happy branches of the routine!

It's making me think that one of the big keys to both Janey and us being happy is to do everything to keep routines that make us unhappy from being established, and do everything to make routines that make us happy established.  I've done this sometimes, without thinking of it as such.  For example, after school used to be a hellish time often.  I thought about what after-school things are positive for Janey and for me.  The first part of coming home for her is always taking off her shoes and going to the refrigerator and looking for a snack.  Now, I always have a snack she will like waiting for her to find.  Before, I'd wait for her to ask, and if she asked for something I didn't have, the routine was for her to freak out.  Now, since she does the looking, her routine is to eat the food she likes that is there.  Next, she watches a video.  Before, if I was in the middle of something, I'd tell her to wait a bit to put on the show she wanted.  Then she'd scream.  Now, I make myself available when I know she'll want a show, and put it on right away.  The routine now is to watch the show happily, and my routine is to get to sit there and read or knit.  We are both happy.

It's my parts of the routine that I can change.  Much of the routine for her is reactions to things I do.  It's FAR easier for me to change the things I do to get the reactions I want from her than it is for her to change her routine.  I think this is where I often used to get tripped up, and where things like ABA don't really take into consideration how the mind of someone with autism works.  We think in terms of actions being modified by feelings.  If someone reacts angrily, or someone gives you a treat that makes you happy, we assume that will change the next step.  We think of thoughts like this... "Mama waited to put on the video because she was busy, and when I screamed, she said she wasn't putting it on because I was screaming, so next time, I won't scream"  But Janey thinks (I believe) more like "First I ask for a video.  Then Mama says not right now.  Then I scream.  Then I wait a little more.  Then later Mama puts on the video"  Janey's screaming is part of the routine.  But if I am available to put on the video right way, I switch Janey to a new routine, a branch in the other one, one where she happily watches a video and I don't have to hear screaming.

So much of what has worked over the past few easier years has come about by what many would probably see as us "giving in" to Janey.  What I think people who see it that way don't get is that we ALL are much happier.  Why is "giving in" seen as bad?  I think it's because we again don't think the way Janey thinks.  We think of someone more typical, someone who might think like "So if I make a fuss, I get what I want.  I need to use that!"  Janey doesn't think that way.  She doesn't generalize that way.  She thinks in terms of the sequence.  The sequence can include screaming or not, but it's not a cause and effect in her mind.

I might not be explaining this as well as I wish I could, but in my mind, it's been a bit of a breakthrough. Higashida explains routines much better than I do.  And I very much appreciate how hard it was for him to write the books, and I thank him for doing so.  His insight is going to make at least a few lives, those of our family, easier and happier.

A Little Beyond Happy

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

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

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

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

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

Sometimes, you do have to cry

I've been working at starting seedlings inside a lot this spring.  It's been a mixed bag of successes and not.  I started everything too early, and the spring has been very cold, but everything was getting too big for the starter pots and too leggy to live, so I had to put a lot of things outside before they were ready, and they are not doing well....and I could go on and on.  All this is said as background information for yesterday and my big cry.

Janey came home from school in her typical after school no talking mode.  We have worked out what she likes to do, and it doesn't need a lot of words---a little cuddle, then a lot of cheese and onions, then some videos, then usually a shower.  We did that routine, and I put a dress on her to be ready for the next part of her evening routine---a car ride with Tony when he gets home.

Not my actual seedlings, but very similar ones!

Then I made my big mistake---a quick check of my email.  Janey was happy, in the next room, watching a video.  I got an exciting email from William, the older of Janey's two brothers, saying he had been nominated for a history honor society, kind of like Phi Beta Kappa for history majors and historians.  I was very proud of him, and wrote a quick email back to say so, and then started to forward his letter to his grandparents.  Janey came over at that moment, and I noticed her dress, previously clean, was covered with dirt.  I ran over and saw she had somehow, in the literally three to four minutes I hadn't been actively watching her, played around with some pepper seedlings I had been planning on planting outside that afternoon later.  They were all over the floor, dirt was everywhere and a spring's worth of growing them was going to be for naught.  It was actually pretty impressive how much she did in so little time.

I stayed calm.  I didn't even feel like being angry---I don't get angry that often.  And at first, I didn't even feel that upset.  But as I started to clean up the table, floor and Janey, I started to cry.  I couldn't stop, once I started.  I had been feeling low for a few days, and it all hit me hard right then---that still, after all these years, it was still impossible to have a few minutes to myself, how it felt unfair to William and to Freddy how rarely I could concentrate just on them, how I couldn't see any end in sight to the tough parts of life with Janey.

As I tried to clean, she decided she wanted a video.  I told her I had to clean up first.  She didn't take that well, and started screaming and arm biting.  I kept cleaning, and kept crying.  When she saw I was crying, she gave me a curious look, but then went back to screaming "I WANT KIPPER!"  In that moment, I felt totally defeated.  I felt like I can do all I can to keep Janey happy, and still, the minute I can't do what she wants that second, she's furious.  She doesn't think "Gee, she's been doing what I wanted all afternoon, and in fact for years, really.  I made a huge mess and she's cleaning it.  I could lay off her for a minute"  Of course she doesn't think that.  It's not in her to think it, and when I am not in a state, I can accept that.  But as the vacuum jammed and the floor became more covered with wet dirt and dead seedlings, I wasn't thinking well.

Life with Janey isn't easy.  I know here I'm supposed to say life with any child isn't always easy, that the special rewards of being her mother make up for the tough times, that it's not a child's role to make the life of their parents easy---I know all that, and I believe all that.  But there's a difference here. Although she makes some progress in some ways, although as I wrote about recently, her stages like the mischief stage do eventually get better, Janey isn't ever going to really grow up.  There isn't going to be a day when she truly understands that I'm doing the best I can, that maybe she could wait five minutes for a video while I clean up, that she shouldn't toss dirt on the ground, that I have feelings too.

I've regrouped today.  I'm ready to get back out there, to do my level best to help Janey have a good life, to try to be the mother I want to be.  But I am pretty sure each of you knows the feeling behind the tears yesterday.  If we don't admit it's tough sometimes, it's a very lonely kind of sadness.  We have to be able to admit this isn't an easy gig, being a parent of a child like Janey.  I am going to resist for now the urge to modify that statement, and just let it stand, for now, for once.  It's not easy.

Groundhog Day

It's Groundhog Day, a day that has perhaps become more associated with the movie of the same name than the actual big rodent seeing his shadow or not.  I love the Bill Murray movie.  I've watched it many times, and today was reading a lot about it---theories as to what it means, how many days it actually covered, things like that.  And it struck me suddenly---life with Janey is a lot like life in Groundhog Day.

Day to day, things don't change a lot with Janey.  There are tough periods and easier periods, but they swing back and forth.  There are little bits of progress, but they are often pared with little bits of regression.  She gradually switches interest from one set of videos or playlist of songs to another, but often switches back after a year or two.  In general, life with Janey over the years stays in most big ways the same.

My first reaction, thinking of that today, was that it brings up one of the topics I haven't addressed much here, because I feel a little ashamed of it.  It's boredom.  Sometimes, raising Janey can be boring.  As a parent, we are used to the rush of changes in our children.  They go by almost too fast sometimes---learning to read, making friends on their own, going out places by themselves, starting high school, graduating, going to college...I've been through it, and it is quite a whirl.  It's not boring, you can say that for sure.  But sometimes, I wish that there was more of that with Janey.  It's not HER that bores me, it's the routines.  I think about her coming home from school.  We do the same thing, every day.  She goes to find food, I help her with it, she wants to snuggle, I lie down with her, she gets up and watches some TV, we start waiting for Daddy, he comes home, he cooks for her...We don't talk about her day.  We don't discuss new things she learned.  I try, sometimes, to sneak in something new---yesterday I suggested a walk.  She went from happy to meltdown quickly.  Sometimes, I try hard to read her a book or play toys with her.  She either pushes them aside, ignores me completely or freaks out.  I realize she's tired from her day at school,and that there is comfort in routines.  But forgive me for saying so---sometimes it gets boring.

However, that's not the message of "Groundhog Day", I don't think.  The message is that with a day that is the same every time, we have time to perfect it.  We are able to look at each variable and make it better.  And with Janey, we can do that.  I can say that life now is easier than it was two or three years ago.  It's partly Janey, but it's partly us, I think.  Take that afternoon.  I make sure there is always food she can find.  She doesn't want it handed to her.  She wants to look for it.  So I get something ready and put it in the fridge or on the counter.  When she wants to snuggle, I set aside everything else.  I know it's essential that I spend that time next to her---not asking questions, not trying to do workbooks, not pushing play on her, just being with her.  Then, when she wants TV, I've figured out through many, many Groundhog-like Days that she will never stay with her first choice.  She watches it for a second, and then wants to switch.  Now, I put on the first show and stay right there, and say "Tell me if you want to change shows"  That averts a meltdown, as does the snuggling, as does the food available but not handed to her.  I've figured those rules out over time, and by using them, most afternoons are fairly smooth.  I know too that she will break down a little each day before Tony gets home.  She seems to need it, and I just ride it out, not trying to figure it out or calm her down, just letting her have her small time of crying.

Life many parents, I am sure, I think about raising my older kids, my boys, and wish I could go back and savor a lot of the moments.  They were moving targets.  One day, the boys didn't want to leave my side, the next, it seemed, I have to rely on text messages to know where in the world they are.  One minute, they are keeping you up all night as a baby, the next moment, they are keeping you up all night waiting for them to get home.  Nothing lasts.  But I've been given a gift, if I accept it, of a child that grows very, very slowly.  I have many, many days to get it right, and I will keep trying to do so, Groundhog Day after Groundhog Day.

"Take Care of Yourself"

I've been told to take care of myself a lot.  It's good advice.  I've been told the story about how on airplanes, they always tell you to put your own oxygen on first before helping your child.  Yes---that is true.  But the simple fact is, with a child with autism, it can be very, very hard to take care of yourself.

I've had some horrible jaw pain off and on for about a month now.  I keep hoping it will go away, as pains usually do, but it hasn't.  I'm sure it's nothing serious, but it's been bad enough today that finally tomorrow morning I have a doctor's appointment.  I wanted one sooner, like today.  But by the time that around 10 am I realized the pain was enough that I really finally needed to give in and get some help, it was too late.  Too late because by the time I could get an appointment, I'd be too late to greet Janey's bus.

Now, that's not just an autism problem.  Of course, everyone needs to be home for their kid's bus.  However, what hit me today is that most people would have options if it were just impossible a certain day.  They would have people around that could care for their child.  The child might be in after-school.  And at 11, Janey would probably still be a bit young, but by 12 or so, she could come home alone even if really need be.  I had none of those options.  Nobody can watch Janey but Tony or me.  It's not that they wouldn't want to---it's that they honestly are not able to do it.  She is too tough.  The after school program has a ratio of students to kids that effectively excludes Janey (and I know the law might say they HAVE to provide for her, but what the law says and what can be done without a long, expensive fight are not the same thing).  She certainly can't stay alone, ever.  The only option would be having Tony come home early.  Because of all the time Janey spent in hospitals the past year, he doesn't exactly have a ton of sick leave left, so that is a total last resort.  And so---I couldn't make the appointment for today.

This is a little example of something that comes up over and over.  I appreciate people telling me to take care of myself.  It's a very good reminder that I should rest when I have a chance, and not feel guilty about it.  Sometimes, though, taking care of myself just isn't possible.  Even making the call today to get the appointment involved talking over Janey's screaming, as she was upset I was on the phone.  A lot of times feel like that.  If I take care of myself, I am not taking care of Janey.  As if to illustrate, as I tried to edit this paragraph to better say what I want to say, Janey asked me to cuddle her.  I tried briefly to put her off, and she started screaming, biting herself and by the time a minute was up, she was hysterical.  Ignoring her is not an option.

And I am one of the lucky ones.  I have a husband who does more than his fair share.  I have school, which allows me to nap when I haven't slept and to do dishes and laundry. There are people who are single parenting, or have adult children with autism no longer in school, or have other young children.  I won't say I don't know how they do it, because I hate that phrase.  But I know their lives are far harder than mine is.  And mine, to be honest, is fairly hard at times.

I asked on my Facebook page that is a companion to this blog about what respite people have.  I am going to write more about the answers (without names, of course!) in a future blog entry.  But I can already see that countries other than the US do a MUCH better job than we do here.  Here, it seems much depends on the state, or the county, or city, or even part of the city you live in.  It depends on figuring out the complicated systems.  And even with work and determination and knowledge, there is often just no help available.  That is a disgrace.  I am not political.  I am not blaming any party or ideology.  Autism doesn't play politics.  This is something that is going to affect EVERYONE.  If the rate of autism is what it's said to be, then there are going to be a very lot of families that just can't keep functioning, keep working, keep paying taxes, and it's pretty foolish to not spend the amount needed to give desperate families a little time for such luxuries as doctors appointments and sleep.

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.

A Tale of Two Afternoons

Janey gets home from school this year at about 2:30.  This is far earlier than other years, when she went to after-school.  I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation.  That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do.  So for now, Janey has the afternoon at home.

Mid to late afternoon has always been the toughest time of day for Janey.  I think she gets tired by then, due to her poor sleeping, but she doesn't nap.  She has used up her day's reserves of holding it together.  Daddy isn't home yet, and I am tired too.  If she hasn't eaten well, she's hungry.  Her medication is wearing off.  There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.

Monday, Janey got off the bus ready to explode.  She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble.  I went over to her and did my afternoon bit "I'm so happy to see you home!  I missed you a million!  How is my sweetie?  How was school?"  As usual, she doesn't respond.  Her pull-up was very wet, and so I started to change her.  When it came time to put another pull-up back on, she threw a fit.  She ripped the new pull-up.  If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each.  So we discourage ripping.  I said "You don't have to wear a pull-up right now, but you have to wear some pants"  Janey decided she didn't want to.  She let me know this by starting to scream and grabbing my hair and pulling as hard as she could.  It took all my strength to get away from her.

I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon.  Suffice to say it was one of the longest two hours of my life.  When Tony got home, I was beyond discouraged and tired.  Janey was screamed out.  She looked burnt out, glassy-eyed.  So did I.

The next afternoon, I got her off the bus and braced myself.  She didn't look at me as she walked in.  She went straight for her computer, and started watching You-Tube videos.  On impulse,  I said "I'll be here reading if you need me".  She didn't.  For the next few hours, we barely interacted.  A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked.  The house was quiet.  About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up"  I changed her as quickly as I could, without comment.  She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently.  When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.

So what's the message?  I don't know for sure.  Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions.  But on Wednesday and Thursday, I took the same approach.  I kept things as quiet and low key as I could.  I interacted with Janey only when she requested it.  And we had great afternoons.

I keep thinking back to how I often greet Janey.  I do what I did for years with the boys.  I overact.  I truly am happy to see them after school, and I want them to know that.  I shower them with attention.  I think the boys liked that.  But the boys are different people than Janey.  Maybe it took me until now to really understand that isn't what Janey wants.  She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool.  Every kid is different.  What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need.  So for now, I'm going to back off in the afternoons.  No more dramatic greetings or smothering attention.  I will play it cool, and we'll see how that goes.

Inclusion vs. separate classrooms---some musing and some ranting

Here's an article I just read about autism and the debate over inclusion vs. substantially separate classroomes...  here----.  The article doesn't come to much of a conclusion, but it prompted me to write about some of my own thoughts on the subject, and to rant a bit over something that angered me!

As you probably know, recently Janey left the full inclusion school she had been a student at since the age of 3, and she now is in a program and classroom for autistic children.  Overall, the transition itself went well   Everyone involved did their best to make it as smooth as possible, and Janey seems to be doing well, or at least as well as before, in the new classroom.  It's too early by far to draw any conclusions about which method of education is better for her.  Deciding that will take at least a year, I think.  But I have a lot of positive feelings about her program now.  I like it that she is being taught life skills, that she has music and art and swimming and gym every week---areas where she can shine in a lot of ways.  I like the structured teaching, and most all reports I get are that Janey is doing pretty well. I hear many wonderful things about her teacher and aides. It's not perfect --she still has meltdowns and tantrums, and at home, we are seeing some tough behaviors, as I wrote about yesterday.  But so far, looking at strictly how she is doing and being treated, I'm cautiously optimistic.

Now the anger.  I didn't let myself write about this last Friday, because I was too mad.  I took some time to calm down, but I am still upset.  I knew going into the new school that the very long school day (right now, Janey is gone from the house from 7-5) was just for this year, that the school had a grant to allow them to offer an extended day for this year only.  I was told there would be after-school offered next year I could sign Janey up for.  Janey went to after-school every day at her old inclusion school, a program I loved.  On Friday, I got the official letter (a form letter) saying that the long day was ending and giving the details of the after-school.

The after-school sounded good.  It included things like computers, swimming, yoga, sports and drumming.  I saw as I first read that it cost $30 a week, which sounded reasonable.  But more careful reading led to this line "We have social inclusion activities available for ASD (autism spectrum disorder) students who are ready and confirmed by ASD Strand Coordinators"  Translation---this afterschool program is open to kids who are "ready for inclusion"  Well, obviously Janey is not ready for inclusion.  If she was, I would have left her at the wonderful school she used to be at.  So she can't go to afterschool?  Not so fast!  There is indeed a separate program for the autism class, focusing on "social skills, life skills and homework" and it's available for "only $150.00 a week"

So---afterschool for regular kids and for those deemed to "inclusion-ready" (a term that makes me sick) costs $30.  Afterschool for autistic kids, AT THE SAME SCHOOL, costs $150.

I'll jump in with what I know might be the response here.  I know autistic kids would require a higher level of staffing.  I know that would cost more.  I understand that.  However, more than FOUR TIMES the cost?  For a program that is about 13 hours a week?  A program that isn't even the same as what is offered the other kids?  Really?

Is this legal?  I am not sure.  Probably.  Is it right?  No.  Kids with autism need MORE help, more school time, more teaching.  Families with autistic kids, let's be frank, need MORE respite.  And although I don't have figures to back this, I am quite sure most families with an autistic child have LESS money than other families.   The needs of autistic children limit a family's ability to make money.

One of the thoughts I used to try to calm myself down about this was that I am not sure I would have sent Janey to the afterschool anyway.  There is no transportation for it, and I've quickly gotten used  to the bus. Even $30 a week would have been a stretch some weeks.  However, in a lot of ways, that isn't even the point.  Janey isn't the only child affected here.  And the issue is fairness, not my personal convenience.

I'm sure everyone involved with this is doing the best they can.  They aren't using autistic kids to make money.  But what kid of a society doesn't have funds available to prevent this?  Where does all the money raised for autism go?  Isn't this exactly the kind of case where one of the many autism foundations out there could help?

And I keep thinking---this would not have happened at Janey's old school, the Henderson Inclusion school.  It would have been beyond comprehension there to change more for kids with disabilities.  If I wanted Janey to go to any program at that school, she was able to---no questions asked.  Ever.  And that is the spirit of inclusion.  That is what I miss---the belief that Janey deserved to be fully included.  But as I told this to a friend, she said---"Yeah.  Until they couldn't do it any more"  I jumped to their defense, but she does kind of have a point.  Inclusion doesn't always work.  I wish it did.  But until it does, can we at least never send home letters that make it quite as clear as the one I got how very separate Janey and the other autistic kids are?

Some late breaking news from later this same day...

-Janey came home today with a new flyer from the principal saying that "several documents were sent out that incorrectly communicated our school's design and cost structure for next year", and saying they would share updated and corrected information about next year's after school program in the next few days, and saying that in the meantime, they wanted to be clear that the program would be equally accessible to all students and families with the same pricing structures for each. Hurrah! I think I was not the only one upset over this!

Observations on a School Visit

I went today to observe a program within our school district, what is called an "autism strand".  It's a section within a larger school that is a collection of classrooms for children with autism only.  Janey currently attends an inclusion school---she is in a classroom with kids with no disabilities, kids with mild disabilities and a few other kids with more severe disabilities like her.  I'm very happy with Janey's school, but to be able to be sure it's where I think she will be best served, I felt it was fair to see what another program was like.

My conclusion?  I still feel Janey is best where she is.  That's not to say I didn't see a lot good in the autism program.  I did.  The two main teachers I saw at work seemed great.  They were enthusiastic, engaged, praised the kids a lot and seemed to be getting the kids to work well.  The rooms I saw had about 8 kids apiece.  There were lots and lots of other people in the rooms besides the main teacher---paraprofessionals, speech and OT therapists, ABA therapists and others.  The kids were busy and for the most part seemed happy.  There were a few behavior incidents while I was there, but they were handled well.  Overall, most the kids seemed to be working at a higher level than Janey does (some were doing work with compound words, others with plurals, for example) but a few kids were working one-on-one with adults and they might have been working more at Janey's level.  The school goes up to 8th grade, and currently does have an afterschool component built in, although the funding for that might be gone next year.

Why don't I want Janey moved?  Well, there are several reasons.  One is that I believe in inclusion, wholeheartedly.  I don't think the best way to educate Janey is in a classroom with only other autistic kids.  I know not everyone agrees with me there, and I respect that.  But I have seen inclusion at work for many years now, from both the perspective of a special needs parent and a regular ed parent, and it works.  It works for both special needs children and regular ed children.  It's no coincidence that Janey's current school scores the highest in the city on many measures (out of MANY elementary schools)---inclusion helps everyone learn.  And Janey learns from her peers.  She is a mimic.  She picks up on every sound around her.  One child that was upset at the autism school made a low screaming noise for a long time.  The kids didn't seem bothered, and I wasn't bothered either, but Janey, whether bothered or not, would pick that up.  She would imitate it. And I'm not saying it's wrong to make that sound, but the goal with Janey is to maximize communication, and I think that is best done by being around children that communicate effectively.

Another reason?  If a school placement is working, why change it?  Janey has had a few tough periods this year, but that's been true of every year and, most likely, will be true of every year.  Overall, however, and this is backed by hard data, she has made progress.  More importantly, for the most part, she has been happy.  Lately, especially, she is truly loving school.  She loves the before school exercise program (which I don't think would work with only autistic kids---it works to include her, because she has many, many models to follow that are following directions), she loves the after-school crafts programs, she loves her student teachers, and she loves (and I love) her special ed and regular ed teachers.  She has wonderful classmates.  Her school has just been approved for a K-12 pathway.  It seems to me like a crazy time to move her away from it.

The last reason is just my gut.  I didn't feel as good about the autism school as Janey's current school.  I'm sure part of that is that I know so many people at Janey's school.  I know she is safe there, and loved.  That is worth a huge amount to me.  But additionally, I like the school physically.  It's clean, it's orderly, it's well-run, it has a great principal---it's just a nice place to be.  The autism school looked shabby, in many ways.  That's a picky sounding thing to say, but it's also something that I think any parent of a regular ed. child would look at.  You want your child in a school that looks cared for, that feels calm and loving.  You want a feeling about your school you can't quite put into words, but you can feel.  I want Janey to stay at a place I feel in my heart is the right place.

Some day, things might change.  But for now, I saw nothing at the autism school that couldn't be provided to Janey just as well where she is, without having to move her.  I am very glad the autism school is there.  It seems like a place that serves the children that go there very well, and I know if I didn't have other choices and Janey did go there, she would be cared for well.  But I do have another choice, and I am very lucky to have it.

Good Old-Fashioned Crying Night

I must have a huge ability to put bad times out of my head.  Maybe it's something that you develop with special needs parenting, so you can go on and face each new day.  If Janey goes a few weeks without a huge crying spell, I can almost let myself think it will not happen any more, despite all evidence to the contrary.  I can let the harsh edges of the last time soften in my mind.  I guess Janey felt I needed a reminder, as tonight was a good ol' cryfest.  It was probably my fault.  I had library books I needed to pick up after I got her at after-school.  She seemed okay, and she had a snack in the car, so I thought we could risk it.  She was good in the library (I just go to the desk and pick up books I have ordered).  She even said "thank you" to the nice librarian who gave her a rubber bracelet for being good (they know her and are better with her all the time, one of the reasons I always go to the same branch at the same time).  But as soon as we got back in the car, she freaked out.  I think it started because I didn't take her to the CVS for a treat after the library. I hadn't said I was going to---I'm trying to gradually phase that out, so I only do it every other time or so.  But Janey I think knew things were off.  She didn't say anything, but stood for a while at the door before getting in the car, as if to say "Forgetting something?"  If she had asked verbally, I probably would have taken her.  But it was getting late and I didn't.  She started screaming in the car, which is a half hour of screaming while driving in stressful areas.  She screamed in the house, despite Tony giving her everything she wanted for supper and then also getting her a Happy Meal.  She screamed pretty much non-stop until she fell asleep.  I mean SCREAMED---with a loud, loud voice.  It doesn't take much of that until I'm a wreck.  I try to be totally calm, to talk to her calmly, to rub her back or encourage her to take deep breathes, to understand what is wrong and try to fix it.  But none of it works, pretty much ever.  And all my theories and good feelings and understanding becomes hard to access, and I just want her to stop.  I go numb, saying the right words to her while in my mind going to some far away place where she isn't screaming. The boys get upset---they can't work.  They go elsewhere to do their homework.  Tony and I can't talk.  Even the cats get spooked.  It's a long night.  It's a crying night.  And I hope like heck it's an isolated night.

Starting the School Year

Janey is off to a good start to the school year.  That makes me happy, although I do always keep in mind that the start of almost every school year has been good for Janey.  She loves being in school.  I think she hates the summer and the lack of structure almost as much as I do.  But that being said, every year it is a wonderful relief that her love of school still holds, and a tribute to the teachers and staff and students that make school enjoyable for her.

This year she is going to afterschool every day.  That was a hard decision for me, but I'm not sure why.  I kept thinking a GOOD mother would not put her child in afterschool unless she absolutely had to, or if she did, it wouldn't be every day.  However, what I wasn't thinking about is that a good mother also takes into consideration what makes her child happy.  Janey did not like it last year having an inconsistent afterschool schedule, and she never liked the 2 hours before Tony got home on the days she had no afterschool.  When I pick her up this year, she is always extremely happy.  The principal helped me get over my final worries, by saying "Look how happy she is!  This is where she should be after school, if she's that happy!" That helped a lot.  It's all part of the process, realizing that Janey is not my other kids.  She needs more people, more support, more activities than I can always realistically provide at home, with the other duties I have.  So she is happy, and I am happy, getting more work done than usual.

I'm noticing the one time she does fall apart now is right before bedtime.  When she gets tired, like almost everyone, she has trouble holding it together.  I am starting, when that fussy time hits, just quitting all else and lying down with her, and singing and talking and just spending some alone time with her.  Often, she drifts off after a while of that, but if she doesn't, she's at least calmer.

The other day, after a grocery store trip, a Beatles song kept running through my head, the lyrics that say "I have to admit it's getting better,a little better all the time"  It isn't always, but that trip made me see how far she has come.  Once we got in the store, I barely held her hand.  She stayed with me, and the few times she got a little further than I liked, she came right back when I said to.  She picked out a few things she wanted from the shelves (mainly BBQ chips in 2 different sizes) and she hummed to herself and was very cheerful.  When we got to the car, she wanted her chips, but I told her they were for after school (this was before school) and she accepted what I said without a tantrum.  I didn't feel drained or out of it after the trip.  I am sure people looked at Janey, and wondered what was up with her, but I really didn't notice or care.  It's not just her who is progressing, it's me, too.

And so a cheery post for once.  The fall is my favorite time.  It feels like a return to regular life after the summer.  It always gives me hope, as the spring seems to give other people hope.  Janey is growing up, little by little.

Crying Morning

Yesterday was Janey's first day of afterschool.  She was playing outside when I went to get her, and was extremely, extremely happy.  She loves running around outside with other kids more than anything else in life, I think.  It was great to see her that happy.  She was initially happy to see me, but when it became apparent that I was there to take her home, she lost it---screamed and cried very loudly.  And she cried all the way home in the car, most of the evening until she went to sleep and most of the morning after she woke up.  I'm very glad she likes school that much, but it's kind of depressing that she reacted quite that strongly to being taken away from it, after being there 8 hours.

This morning at school was tough.  Janey decided in the car she wanted juice, which I didn't have in the car.  We got into the classroom and Janey saw cupcakes, there for someone's birthday, I am sure, and she tried to get one.  I grabbed her away, but not before I think she crushed one or two.  She was not at all happy.  I decided to take her down to get breakfast, as the school district now has universal free breakfast (a WONDERFUL idea, if I might say so as an aside).  However, there was no juice there at first.  Knowing Janey's preferences, they found some for her, thank goodness.  Janey calmed down a small amount, and I took her back to class.  I hope she has a good day.  She probably will, but I'm drained.

I've said it on this blog before, and I'm sure I'll say it again in the future, but crying is the toughest thing for me.  I don't know how to deal with it.  I don't know if there is a way to deal with it.  I don't know how to keep Janey happy.  I don't know if it's possible.  

Now I think I'll have a little morning nap.

Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!

A glimpse at another Janey

Yesterday when I went to pick up Janey at after-school, she was out in the courtyard. I went out to call her in, and saw something that will stay in my mind forever, I think. She was playing ball with a group of kids. They were throwing basketballs and chasing after them---a kind of modified soccer. Nothing formal, the kid of recess game kids play. And Janey was playing with them, completely with them. They weren't "including" her, she was completely like all of them. She ran when they ran, laughed in a non-manic, non-autistic way, was red in the face from the running, happy and coordinated and PART OF THE GROUP. I stood there like in a trance. It was like I had somehow entered a parallel universe, the "normal" Janey universe. She was graceful and athletic---much more so than either of her brothers would have been in a similar situation. She was just another little girl playing.

And then of course the over-thinking took over. I questioned myself as to why I was so overwhelmed and happy with what I saw. I felt guilty---do I wish the other Janey, the real Janey, away? Do I just give lip service to celebrating her uniqueness---do I really just want her to be normal? And of course, a little, I do. Autism is hard. It's hard for us, it's hard for her. But I think there was something else there.

I thought about my proudest moments with the boys. They are moments when they did something I could never do---when they showed me who they were. With William, it was seeing him play guitar and sing on stage. With Freddy, it was seeing him act. They are the moments when you realize they are amazing people in their own right, not because you made them that way. And that was what this moment with Janey was like. I couldn't be part of a sports moment like that. No way on earth. The boys couldn't either. I've never seen either of them at ease playing sports. It's not them. But it's Janey. We've always realized she got the gift of being athletic that shows up very rarely and randomly in both our families, like red hair showing up from some long ago ancestor. It's completely apart from her autism. And that was the gift of what I saw. I saw a Janey that wasn't labeled, a Janey that wasn't a special ed student, or a medical mystery, or a case. It was just Janey, doing something she was good at. And I'll never forget it.

Never know when it will hit you

Today was mostly a very nice day. Janey and I went to the library, where she played for a bit in the children's room while I looked for books for her (and only freaked out when I showed her a book by the Maisy author that wasn't a Maisy book---that was a bit much for her, but I took it out secretly anyway), and then we went to Chipolte with Freddy, and Janey was an angel there, after it being such a horrible scene a few weeks ago---she was as happy as could be, and ate well. She was even happy when I went to the Savers after that to get Freddy some school clothes. She has been a sweetie.

So what hit me? I started reading a book called Not My Boy! by Rodney Peete, an NFL star whose son was diagnosed with autism. It was about how he came to terms with that. There is of course all the awful early scenes with people saying his son is unteachable and low-functioning autistic and it's all so upsetting. Then gradually as I was reading, I realized that his son, who was 4 in the part of the book I got to, was FAR ahead of Janey---answering questions, writing letters, reading some, explaining what a fire engine was used for in one pivotal scene, etc. And I thought---and they think HE is low functioning? And I started thinking about how little Janey really can do---she's about as far from answering a question like how a fire truck is used as she is from flying to the moon, if she ever wrote a letter, it would be a day of all days...and I got thinking about her, and my friend's daughter, and all the other kids out there with autism who don't even seem to fit into the autism world anymore---the non-success stories, the kids who have "got it bad". And yes, I'm not supposed to think like that. And I'm not sure why it hit me so hard this particular day. I don't read a lot of accounts about autism, and this is a well written nice one, but I don't think I'll read any more for a long time. I start thinking not nice thoughts like "what have YOU got to complain about?" and that is not helpful to me or anyone. And I'm just thinking---autism really is a rotten thing to have. I don't mean Janey is not a joy, a wonderful girl who many times a day makes me very, very happy. But it's not fair to her. Why should she be autistic and retarded? Where is that fair? And the grownup voice inside always says something like "Life isn't fair. Think of people who have lost children" And I do. And I can't even think about it, it makes me so sad for those people. I haven't lost a child, I have her. But life is going to be hard for her. Now is probably the easier part. She is a beautiful girl, and I live in terror of that---of the world out there that takes advantage of beautiful girls, the world that values smart and self-assured and hip, a world that pays a lot of lip service to including all, but can't even find the funds for a single bit of respite, or after school care, or can't field a camp that can handle her. And I need to stop crying.

Wasted money, discouraged

I did a lot of research the last few days, trying to get ideas about good toys for autistic kids. Janey has very few toys that engage her, and I would love to find some. I read a few places how some kids like the Vtech V-Motion. She's interested in video games, at least in trying to get in on ones the boys are playing, although she can't figure them out. I thought it was worth a try, so bought her one and one game (Wonder Pets). The console wasn't that much---$40, but the game was another $15. She had less than zero interest. She didn't get how the motion sensor worked at all. You can set it to use the joystick, which I tried, but she wasn't into it much that way either. Part of it I think is the horrible graphics. I don't know why that kind of system is about 20 years behind "real" systems. And part of it is just that all of a sudden the game demands you do something like figure out what letter or shape to use, and she can't do that. I wish there was a game JUST FOR HAVING FUN for her age---one with decent graphics, where she could move a controller to drive a car around, or explore. I think she's be able to figure it out. Oh, well. I also got her a big mushy ball with pocky rubber spikes, and she likes that, and I got a bunch of Mister Potato Head stuff, which engaged her for about 15 minutes (with me right there of course, egging her on). And there went most all of the money I managed to make working all week on ebay. I wish I had more money. Don't we all. It just seems so unfair sometimes thinking there is ANYTHING out there that could help Janey that I just can't afford. I know that is life, but sometimes I wish life wasn't like that. I would love to get her an iPad. I think she'd be able to figure that out easily, with the touch screen. I'd like to get her a whole huge amount of sensory type toys, fill a whole room with them (if I had an extra room). I'd like to find the perfect camp for when she's a little older. I'd like to be able to even afford after-school at her school. I'd like to be able to get her extra nice clothes. I wish I could afford a babysitter, but with that wish I also would have to wish I KNEW someone would would babysit her for pay. As you can see, this is a dreaming session. I just felt so fed up today with how I chose to spend the little money I had on something that seems like a waste now. It might work for her someday. And it's just money. I'm just indulging myself in self-pity here. Hopefully anyone reading has given up on this post by now, so they don't have to hear all this! But if you didn't, I should say Janey was quite sweet today, good at the ToysRUs, cheery even if she didn't want to play anything, looking precious. So I can't blame her for my rotten mood!

Screaming night

Janey had one of her screaming crying nights last night. About 6 she started to whimper, and then it turned into full blown screaming and crying for hours. Her nose was running a little which sometimes makes her crazy. She kept saying "Don't push Jhondell" (a boy in her class) so maybe she pushed him or he pushed her, and it kept flashing back,but it's hard to say. After a couple hours of crying my patience is just gone. Tony finally took her in her sleepers for a ride in the car until she fell asleep, and she slept all night well and is still asleep. I can take almost anything but the non-stop crying.

Today she starts after school. It's hard because I can't really explain it to her. I did the best I can but I am sure she has no clue. I hope it's not a disaster. We get it for free, one of the few benefits ever we have gotten from the state, mainly because I never apply for them, just another form of denial, but also because we are above poverty level, but don't make enough to actually afford anything on our own.

Oh, well. Janey's talking isn't bad lately. She has started using people's names a lot when talking,like saying "Mama, I want cheese-its!". yesterday she was talking about a snowman, and I asked her where it was, and she actually SHOWED me---it was painted on an advent calendar thing we have!