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Friday, November 30, 2012

Ways I'm not smart, ways Janey is

Janey's recent testing has led me to think a good deal about what "smart" means.  You can take smart as something a test can measure.  If you do that, well, I would test smart.  I am good at the skill of taking the tests that have been chosen by a lot of educators to define what they have chosen to define as smart.  However, over the years, I've had many occasions to realize that doing well on those tests means---doing well on those tests.  Not a lot else.  If you look at my life in terms of financial success, or major academic success, or artistic success, or a lot of other measures of success, I would not test very high at all.  The tests don't predict much, except that you will probably do well on future tests of the same kind.  There are a lot of ways I'm not smart at all.

I learned quite a few of these ways during high school.  I'm hopeless at foreign languages.  Everyone around me was learning vocabulary right and left, and I just couldn't.  This is also a problem with me for learning names.  I don't have a good memory at all for verbal words.  Janey is extremely good at this, obviously.  She seems to store every word she's ever heard someplace in her brain, and when she wants to, she can recite them back.  I also could not for the life of me remember the names of various parts of things, like in biology.  I remember studying for a test on the parts of a fetal pig.  My friends seemed to be to be able to glance at the pig and know all the parts.  I truly worked hard at trying to learn them, but failed miserably.  I also learned, well before high school, that I am about the worst athlete on earth.  The horrible memory of a relay race in gym that involved my team not being able to move along until I got a basket still burns.  The WHOLE TIME OF THE CLASS was me trying to get the basket, with about 20 girls around me snickering.  When I see Janey run or climb, I am always stunned by her natural grace.  It goes without saying I can't dance or do aerobics type stuff, while Janey seems able to learn a dance routine she sees after one view.

I also don't have the gift of being able to push myself to work very hard.  My school grades were good, but they could have been much better.  I see how William works at his homework, and I know I never put in a tenth of that effort.  When Janey wants to do something, she doesn't give up.  I'm a giver-upper.

I remember very plainly the moment I realized I was just not musical.  I had been playing the trumpet for 7 years at that point.  I was the worst trumpeter in the band.  Most of the time, I was just faking it, not playing at all.  It struck me like a ton of bricks "I am just not good at this.  No matter what, I'm not musical"  It was actually a relief.  I believe in that kind of realism in life.  Not everyone is good at everything.  Janey doesn't play instruments, but she can instinctively sing in tune.  She appreciates good music, and knows the difference between that and bad music.  She has the musical gift.  I don't.

I am also the messiest person on earth.  I've always been that way, and I probably always will be.  It's an area where no matter how hard I try, and off and on I HAVE tried, I just can't keep things neat.  This was the case with my desk in elementary school, this was the case with my locker in high school and this is the case with my house.  I don't see the mess well.  I don't know how to keep things organized.

There are things I'm good at.   I'm one of the fastest readers you are likely to meet.  People tell me I'm a pretty fair writer.  I'm not bad at trivia.  But overall, the ability to score as a "gifted" child on IQ tests has done very, very little for me in life.  And I need to keep that in mind.  I believe in reality.  I'm not going to dismiss the fact that Janey will most likely not learn to read well, not graduate from high school, not hold a job.  But none of that means she doesn't have areas where she is very, very smart, smarter than I'll ever be.

Thursday, November 29, 2012

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.

Tuesday, November 27, 2012

Motivated to get it wrong

This morning, I worked with Janey on an on-line reading program her school uses and that you can use at home, Lexia.  Janey was happy to use it.  She was familiar with it from school, and was able to use the mouse pretty well and do the activities it asked her to.  At her level, it's mainly picking a letter, hearing how it sounds and what kind of words it is used it, doing a little game like a puzzle or a find-a-letter picture and then listening to two words and picking the one that starts with the letter you are working on.  Janey did well until that last part, and I noticed something odd about how she did on that part.  She got the answer wrong EVERY time.  There were only 2 letters to pick from, and the program was smart and moved them around after you got it wrong once, and pure chance would say she'd sometimes get it right, but she didn't.  And I soon realized why.  If you got it wrong twice, the voice said "Let me help you think about this" and then picked the answer for her.  Janey echoed "Let me help you think about this" in the exact tone of the computer voice, and laughed like crazy.  She had quickly figured out how to get what motivated her, by not getting the answer right.

That made me think how often something like that happens with Janey.  She isn't motivated to get things "right", whatever our notion of right is.  She isn't motivated to make other people happy.  She's motivated by herself---by what makes her happy.  So she'll spend long periods of time doing what look to me to be boring apps on the iPad if they make a sound she likes as a reward.  She'll work to get at foods we don't want her to have right then, if she can get a bite or two before we start all the yelling and showing her what a mess she made.  She doesn't care we are upset---she got what she wanted.

It explains a lot what makes learning hard for Janey.  It might not even be so much that learning is hard---it's that motivating her to learn is hard.  She can do quite complicated things when she wants to.  She's pretty much figured out Netflix instant viewing.  She knows if she wants strawberry milk, she needs to bring me milk, the strawberry powder, a glass and a spoon.  She can somehow "read" the VHS tapes, even ones without pictures, if it results in the right one being put on.  She knows the words to every Christmas song out there, and if you'll sing with her and leave out words, she'll show that.  But things she isn't motivated to do?  No way.  It's why giving her little rewards like M&Ms can bring out knowledge we had no idea on earth she knew, like the time she spelled her last name or said which brother was bigger.

And that's the challenge of autism and learning, right there.  How do you get your child to WANT to learn the things they need to learn?  I usually have no idea.

Sunday, November 25, 2012

Another Day, Another Book

My mini-marathon of reading autism related books continues.  Yesterday I read "Next Stop" by Glen Finland.  Her son David is an adult with autism (and other issues like Tourette's), and she writes about learning to let go of him---teaching him to ride the Washington DC Metro system, having him go for two years to a training program far from home, helping him get jobs and watching him develop his own life.  I liked the writing.  It's a little old-fashioned in a way, kind of detached.  It reminded me of books like "Please Don't Eat the Daisies"

A couple major thoughts came to mind while reading this.  One is the sub-theme of David's brothers.  Although the author respects their privacy in the writing, I get the feeling that growing up with David was not at all easy for them, and that there still is lingering problems due to this.  The brothers don't seem to show up for major events in David's life much, and although they love him, I think they were scarred a bit by all the attention he required growing up.  They were close in age to David, and I hope the fact my sons are not close in age to Janey helps with that issue some.  But I know there are times they miss out on a lot due to Janey.  I like to tell myself they are learning to be independent early on, and that I am there when they really need me, but I wonder.  I don't know if there is any way to totally keep a sibling's autism from taking away something from a childhood, but I want to do the best I can in this way.

The other thought that kept coming back to me is how in some ways it's probably easier to raise a lower functioning child with autism than one like David.  In a lot of ways, of course, it's not.  But I don't think I'll ever have to deal with worrying about where Janey is when she's off on her own.  I can't really picture a day she'd ever go anywhere on her own, even to the store we can see from the house.  She very rare is anyplace out in public without her hand firmly held by one of us.  I don't think I'll ever have to worry about how she'd doing at her independent job, or how life is treating her when she is away at a training program, or if people on the street are scamming her.  I don't think it will be hard for us to get a power of attorney for her when she gets to be that age.  It's pretty clearcut with her.  She's not going to "pass" for normal any time soon.  I can't even fool myself into thinking she does for a second when we are out in public any more.  It's very clear to anyone that sees her that she is "special" in some way.  And although of course I'd give pretty much anything for that not to be the case, it does make some things easier.

The book is one that needs to be read by those making the policies that will affect the Davids and the Janeys in the future.  There are going to be a heck of a lot of them becoming adults in the next 10 or 15 years, and I don't think anyone out there is prepared.  It's going to have a HUGE impact on society.  Even if we decide every family just has to take care of their own, and as a society take no responsibility, that results in a lot of families with reduced earning power, and therefore reducing spending.  That will affect the economy, if you want to look at things from the most economic way possible.  It might be more cost-effective, in the long run, to provide help for these families.

I'm probably going to take a break from reading about autism for a little while.  I'm a little burnt out of the topic.  But it's good for me to read the books now and then.  I need the perspectives.  It's a big spectrum out there, and we all have something to teach each other.

Saturday, November 24, 2012

What Made Janey Autistic #3 in a series

From as early back as I can remember, for some reason, I've been fascinated with genetics.  I've read everything I can find about it.  My sister shares this interest, and we actually used to pretend that our dolls suffered from a rare genetic disease we called Ingalls' Syndrome (I think we were into Laura Ingalls Wilder at the time).  It has symptoms that made dolls, well, doll-like---floppy and not too good at walking on their own.  My sister Carrie came close to going into genetic counselling, and I've kept up my interest through reading over the years.

Genetics, however, when it comes in the form of possibly genetic-linked traits, is not quite as thrilling when it happens to  your family.  But it's certainly a possibility for a cause for Janey's autism.  And a delicate subject.  I'm not going to list family members on both sides with oddities that might be somewhat autism-related, but suffice to say they exist, for sure.  Nobody has full blown autism, but both sides of the family tree are peppered with quirky people.  It's certainly possible that some genes came together that were enough to give Janey autism, or more likely put her in a vulnerable state where getting autism was more likely.

I've always wondered if it's possible Janey has some genetic disease that hasn't been identified, maybe a mild version of one or a mosaic version.  She has a few physical soft markers, little oddities.  One is her toes---the 2nd and 3rd toe overlap, and they are slightly conjoined---not connected, but they seem to share a common root.  She has angel bite type birthmarks when she was a baby that still show up when she cries hard.  A pediatrician at the clinic that diagnosed her said her heart was in an odd position--she even said she thought it might be on the wrong side, but my pediatrician said at most it's more in the middle of the chest than most people's hearts.  She had the late walking, but that's fairly common in autism.  And there was the one MRI way back that showed she had some white matter in her brain where it was supposed to be gray matter, some little dots of it I guess.  But a further MRI didn't show that.  So little things, which of course I've Googled to see if they fit into any pattern, and haven't found one, as of yet.

I do believe that genetics are a huge force in making us what we are, more than most people think or like to think.  I'm fairly sure that genetics have something to do with Janey's autism.  It's another component, along with the first two parts in this series.  When gene analysis gets even better, I might see if a geneticist can have a look at her genes, but at this point, the genetics of autism isn't at an advanced enough point to make that worth it, I don't think.  Until then, I'll call genetics a strong maybe as a cause.

Friday, November 23, 2012

Some reading

I read a couple books lately about autism.  I come and go on reading autism-related things.  Sometimes I'm not in the mood---I need the mental break that reading on completely unconnected subjects brings---but sometimes, it's good to read the perspectives of others that are dealing with the whole bit.

The first book I read about "If I Could Tell You" by Hannah Brown.  It was actually a novel, about 4 families with autistic kids.  It was set in NYC, in the moneyed high-level career world, which probably biased me against it.  I can never understand why the publishing world seems to publish SO many books set in that world, a world most of us just can't relate to one single bit.  I guess it might be because that's where the publishing houses are, and when the readers at them read book proposals, they think "Wow, that's so much like my life!"  Pretty narrow way to look at things, but I digress.  Aside from being annoyed that the people in the book barely blinked at spending sums of money that would keep my whole family supported for years on whatever autism therapy they chose, it wasn't a bad book.  The parents all picked different ways to deal with the autism, and reading the book would provide a good introduction to these ways, like ABA, Floortime, medical procedures (a bit quackish ones), more mainstream autism schools and so on.  The book seem to feel none of these therapies work well, at least in the eyes of the characters.  The only one that seemed to show promise was called the Sapir Method, and is mostly only available in Israel.  I didn't get a very clear view of what it consisted of from this book.  The book also featured career drama, affairs, family drama---all of which to me seemed a little pasted in to make it a book not JUST about autism.  But I'd say it might be worth a read.

The other book was "Seeing Ezra" by Kerry Cohen.  It was a more conventional autism memoir by a mother.  I liked it mostly.  The author gradually came to a conclusion I think I've come to also---nothing really changes autism.  It's part of the child, and the best idea is to accept it, love the child with it, and work gradually and gently to make their lives better and easier.  I admire Cohen for realizing this pretty early on, and taking Ezra fairly quickly out of situations and therapies that weren't working.  Ezra is higher functioning than Janey, but with some challenges she doesn't have, like eating only a very few foods.  It made me feel lucky Janey is an omnivore---something pretty unusual for kids with autism.  I felt flashes of annoyance at the money issues in this book too.  The family always has a nanny or au pair.  They ask parents for monetary help and gets all kinds of money for a new school.  I realized, though, when thinking about the two books, that the money didn't really make a difference.  In some ways, the fact we don't have any money to try anything much with Janey has prevented us from trying things that most likely would not have done much anyway.  But I wonder if people publishing these books realize how much it can irk us regular folk out there that they always have a nanny or babysitter or someone else being paid to watch their kids while they live lives outside autism now and then, and many of us certainly don't.

People often tell me I should write a book.  I've thought about it, outlined one, and maybe some day I will.  But I struggle with a few things to do with that.  There are many autism memoirs out there.  I would need to feel I could write one with something new to say.  I also think about the boys' privacy.  Any book would have to include them a lot, to tell an accurate story, and they deserve to not be written about, to have their lives out there for anyone to read.  They don't even like to be tagged in Facebook pictures.  But maybe, in the future, I'll figure all that out.  Until then, I'm glad I have this outlet for my writing.

Thursday, November 22, 2012

Early on Thanksgiving Morn

I had intended to write a post about all I am thankful for today.  That's the traditional Thanksgiving thing to write, and I am certainly thankful for much---wonderful people in my life, great schools, an amazing family, music, books...many things.  But somehow that post was not getting written today.  Last night was tough, not just with Janey but with all three kids---lots of emotions, parent vs. child expectations for family togetherness, the holiday stress, medical issues---it was a hard night.  Not that I'm not still thankful as all get-out, but I thought I'd write a more specific post---about Janey, about being thankful for her.  And I am---with all the challenges she brings, I am hugely thankful for her.

Where to begin?  Maybe when I found myself a bit surprisingly pregnant in my late 30s.  Not that we don't have an idea how people get pregnant.  Not that we didn't realize you don't have to be actively "trying" to get pregnant, just a little not careful.  I won't get TMI (for you older folks, that's Too Much Information) on you here, but finding out on the day after Christmas 2003 that we were expecting child #3 was a big surprise, and a happy one.

And then of course, leaving out all the extremely tough parts of the pregnancy, there was that amazing moment when I got the call about the amnio, the news that we were going to "get our girl", as lots of people put it.  That was one of the peak moments of my life.  I loved having two boys first, but we were ready for a girl.

Leaving out again the hard parts of her birth, the moment I first laid eyes on my Jane was another flashbulb memory, an wonderful one.  She was unexpectably very blond, very light and so, so beautiful!

As Janey grew from beautiful baby to adorable toddler to amazing little preschooler, we had three years without autism.  There might have been signs, but they were subtle enough that early intervention (who saw her because she didn't walk until she was 2), her pediatrician and many other eyes didn't catch it, even though we knew she was at high risk.  I have buried a lot of memories of these early years, and I wish I hadn't.  She was a quirky but fascinating little tiny girl, one who delighted us greatly.

And then the regression.  And the hard years started, the years that continue on.  But still---so much to be thankful for.  Through all Janey has been through, she has retained some amazing traits.  She is physically very graceful---the athlete Tony didn't really get with his boys.  She laughs like no-one else.  She surprises people constantly with her affection, which cannot be bought or bargained for, but is given like an award to those who have earned it.  She adds to our family in so many ways.

I am grateful in a special way for Janey's love of music.  We listen together to songs every day in the car, on the computer, everywhere music lives.  She knows what she likes, and when she loves a song, and we look at each other in amazement at the glory of her favorites, it's the purest, most heart-felt connection I've ever felt with anyone.  It bypasses the autism in her and goes right to the part of her brain that seems to have been never touched by the autism storm.  We connect as equals, or as her my superior, in our love of the music that touches us.

I am thankful I have been given Janey.  She was not the result of a trip to Paris rerouted to Holland.  She is a destination of her own.  For all the challenges, the tough days, the tears, and I will never pretend that there aren't many, I am still thankful beyond my ability to write for Janey, the real Janey, the endlessly frustrating, endlessly challenging and endlessly amazing daughter of mine.

Tuesday, November 20, 2012

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.

Saturday, November 17, 2012

Janey's Twelve Word Sentence

One of the rarer Janey modes is the extremely talkative mode.  It's as rare as the proverbial blue moon, but we had one this morning.  The morning had started out rough, with a lot of screaming and tantrums, and Tony and I decided we better get Janey out of the house fast.  She usually does much better on the go on weekends, rather than sitting around the dull old house.  It doesn't really matter where we go, just THAT we go.  So we took her to the big Goodwill downtown, and then we were talking about where we were going to get a bite to eat, and Janey came up with this sentence "You are thinking you are talking about getting your bear chicken nuggets"  12 words!  I often call Janey "my bear", so that is where that part comes from, and our talk was along the lines of "what are you thinking we should get Janey?  That was only one of about 10 great sentences out of her today, all of which we about what we were actually talking about.  While I was in the store, Tony and Janey were walking around and saw a squirrel up a tree, and Tony asked Janey to say hi to the squirrel (we are always practicing those greetings!), and instead she said "Hey, squirrel, what are you doing up there?"

It's hard to express how rare talking like this is from Janey.  It's like if someone usually was at about the level of subtraction in doing math, and suddenly started doing algebra, and then went back to subtraction, and then had days where counting to 10 was a challenge.  It's the part of Janey autism that is amazing and at the same time, heartbreaking.  How often are sentences like that in her head, and can't find their way out?  How often does she understand what we are saying, and have something to add, but just can't?  Is there some strategy, some magic method I don't know, that would unlock Janey?  I just don't know.

Friday, November 16, 2012

Evaluating Janey

I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday.  We had a meeting with what our health plan calls Developmental Consultation Services.  In essence, it was a meeting with a developmental pediatrician.  We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her.  I had talked to a social worker on the phone about what I felt I most wanted from the service.  I told them I wanted an accurate read on Janey's measurable intelligence.  I feel like that's something I haven't been able to get.  I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her.  I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at.  The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea.  She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?"  The other was a test of skills like building a block tower or stringing beads.

Janey co-operated fairly well for the first part.  She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to.  She did better in some parts that I would have guessed, but not as well in other parts.  I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch.  She was less engaged by the part that required fine motor skills, which surprised the tester.  She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child.  It's the whole "She's supposed to think in pictures, but she thinks in words" bit.

A few things bugged me.  One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes.  She couldn't keep her hands off it, and that interfered with the testing.  I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it.  It wasted time and Janey's attention constantly reminding her not to touch it.  Another was the stupid toys in the office, that were supposed to engage Janey while we talked.  They were not suitable for kids with special needs.  How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys?   But that's just a little blog ranting!

In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited.  She said she felt often that separate classrooms better served kids like Janey, with significant needs.  That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of.  Truthfully, regardless of that, I would not move Janey to another school for almost any reason.  It's partly for the same reason I picked schools for my boys, but even more so for Janey.  Janey is happy at school.  She is loved there.  Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics.  There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had.  For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment.  I am going to start worrying more about that when she is in 6th grade or so.

The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does.  She DID NOT take it well.  Last night was the worst night in probably 2 years.  She was hysterical, completely overcome with screaming and crying and fury.  She woke at 3, still very upset.  She understood---William and Freddy are at school, but I'm not.  I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk.  It's the routine.  For all she knows, we are never going to school again when we don't go for a day.  And that is NOT RIGHT, in her eyes.  I'm going to try hard not to ever schedule an appointment during a school day again.

Overall, yesterday did something interesting for me.  It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like.  I'm able to say more definitively what I want for her and don't want.  I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday.  It was an interesting day in that way.

Wednesday, November 14, 2012

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.

Monday, November 12, 2012

What Made Janey Autistic...#1 in a series

Whenever I run down lists of possible causes of autism, I find no shortage of reasons Janey might be autistic.  Usually, I'm left wondering how she got away with only one case of autism---you'd think she'd have some special kind of double case.  Today, I read this article, about how having the flu and a fever during pregnancy can raise the autism risk, and it brought back one horrible night very vividly for me.  If this was THE cause, it would be a dramatic, specific cause.  So I'll call this #1 in a series, and try to write about some of the other possible causes in the next few days.

That night.  It was about 5pm, and I was tired.  Not regular tired, but a tired beyond anything I'd ever felt in my life.  I was 12 weeks pregnant with Janey.  It had been a very tough start to the pregnancy.  My blood pressure shot up as soon as I got pregnant, from its normally low levels.  It was very obvious this was going to be a pregnancy like my first one, with William, and not like my second one, with Freddy.  The decision was made to put me on blood pressure medication at an appointment at about 10 and a half weeks.  My regular doctor wasn't there.  The doctor who filled in was someone I think introduced herself as some sort of student, or intern.  I wish I remember for sure.  She wasn't a regular in the office.  She prescribed Aldomet, and said "It's extremely safe for pregnancy".  I took her at her word.

After taking the Aldomet for about a week, I got tired.  Not regular tired, but a bone tired.  My face was pale, not a little pale, but people gasped when they saw it pale.  I figured---I was pregnant.  Being pregnant makes you tired.  I remember driving home that fateful night from picking up the boys at school.  I realized I was fighting off sleep, after sleeping much of the day.  When Tony got home, I lay down on my bed.  Suddenly, I realized I felt very, very sick.  It felt like I had felt that way for days, but somehow my mind had not registered that fact.  I decided I should take my temperature.  I couldn't find the thermometer.  I searched and searched, and was about to give up when I did find it.  My temp was 103.  I knew that wasn't good, even in my dazed state.  I called the doctor, and I am not sure if I even made sense.  I said I was coming in, to the evening clinic.  I think they started to ask questions, but I just repeated I was coming in, and hung up.  I called for Tony.  As he was walking over, I think I fainted.  I fell onto the bed, anyway.  He managed to get me in the car, and we went to the office.  By that point I was shaking violently.  When they took my temperature there, I remember the nurse held the thermometer up for me to look at.  It was up to 104.  They called a doctor quickly into the room.

The visit from there is a little hazy.  I know they gave me an IV right away, because I was extremely dehydrated, so much so it was very hard to get the IV started.  I know they took blood.  And I know after a bit, the doctor came back and said I was having a rare reaction to the Aldomet.  My blood tests showed my white blood cells were dangerously low.  My liver function was dangerously compromised.  I was very, very sick.

They sent me to the hospital.  Again, the time there is hazy in my mind.  I know the doctor there said she had never heard of Aldomet causing that kind of reaction.  She researched, and there it was.  It even has a name----Aldomet Fever.  They took all kind of blood, including a kind of special test where they had to scrub my arm for a long time and took what looked like a soda bottle full of blood.  And, at some point, they did an ultrasound.  There was the heartbeat, beating away.

It took me a long time to get better.  And twice more, doctors said things like "I don't think this was caused by the Aldomet"  I printed out a sheet from a Merck Manual online, listing the three things that constitute the type of rare reaction I had---high fever, low white blood cells and liver disfunction.  One of the doctors, I still remember, looked shocked and grabbed the sheet from me.

Much, much later, just a year or so ago, I learned that my aunt also had a terrible reaction to Aldomet.  I hadn't know this.  I also endured a similar reaction when given a sulfa drug a few years ago.  My records show I'm allergic to Aldomet, but no-one made the connection that people who are allergic to Aldomet often also have a sulfa drug allergy.

I remember asking my OB, after my fever had gone down, how this all would affect the baby.  She said that a sickness so severe at 12 weeks usually would have caused a miscarriage.  If it didn't, she said, the baby would probably be fine.  And I know, based on what was known at that time, she believed that.

So---did the Aldomet-provoked sickness cause Janey's autism?  I don't know.  The fever might have, based on recent research.  What it did do, though, was cause me to never again completely trust medication, or, for that matter, doctor's knowledge of medication.  I am very, very grateful that first doctor caught the Aldomet connection.  She was young, and I think she took the time to look up the possible Aldomet reactions.  The older doctors that later questioned the reaction were probably doctors that had prescribed Aldomet for many years, and hadn't seen a reaction.  That's why they call it rare.  But it happens.

I think about that night a lot.  I think I was dying.  I think if I had kept taking the medication, I would have died.  I know that sounds dramatic, but I think it's true.  And a reaction that serious---it's very possible that would have affected Janey, especially at 12 weeks, which always comes up in what I read as a crucial time in development.  But who knows?  As I've said, there are no shortage of other possibilities. If I believed in fate, I'd say that fate wanted Janey to be autistic, and took no chances in making sure she was.

Saturday, November 10, 2012

Calming Down

Just now, Janey did something she's hardly ever been able to do---calmed herself down (with a little help).  She had just been at the grocery store with Tony, and had seen a cake she wanted.  Tony didn't mind getting it, but in the bustle, forgot to.  At home, Janey asked for the cake, and of course there was no cake.  She had been in a wonderful mood all day, but fell apart at the cake news---I guess she really had quite a craving.  She screamed and cried and looked to be in sadness/hysteria mode.  I went over to her, put my hands on her shoulders and asked her to take a deep breath, and said if she could calm down and ask nicely, Tony would go back and get the cake (he believes very heavily on following through on promises to kids, and he had told her at the store she could have it).  Janey took a minute, looked at me, and said in a controlled voice  "Do you want to get a cake?", her usual means of asking for things.  We gave her a big hug, got on her shoes, and they are now off to get the cake.

It made me realize there is progress.  It's slow, it's back and forth, it's inconsistent, but it's progress.  Her getting upset is no longer always the sure sentence to hours of hell it used to be.  It often still is, but not always.  It's a combination---we are figuring her out and she is figuring us and herself out.  And we'll have some cake to celebrate.

Wednesday, November 7, 2012

The parts of life Janey will be spared

I'll never be paternalistic enough to say I am glad that there are parts of life Janey is lucky to miss.  It's not lucky to not get to experience all life has to offer.  However, there are trade-offs involved in not really being aware to a large extent of the world around you.  There are pains that Janey probably won't feel in life.  No mother wants pain for their children, of any kind, although they are part of a full life.  So in a tiny way, I'm glad that she is unaware enough so that while she can't totally participate in many of life's events, she also doesn't have to feel some of the deep pains life brings.

What made me think of all this is the election.  I am not very political, but my older son is.  He was thrilled to vote for the first time, and quite happy with the results, but that will not always be the case in his life.  He will feel the frustration and sadness that the world doesn't share his deeply held views.  Janey has no awareness of politics in any way.  Last night I was trying to get her to say "Barack Obama" and "Mitt Romney", why I am not sure, just because those names were out there a lot.  She tried a little, but I realized it was a silly game.  She doesn't know they are people, she doesn't care.

Then there's the social world of girls.  Girls are cruel, often.  I know that.  I was a girl.  Girls are far crueler than boys mentally.  Freddy has seen that, and is shocked sometimes at what the girls around him do to each other.  I think about 7th grade, for every girl out there.  It's hell.  You are judged on every word you say, every action you take, and there are always mean girls, waiting to take you down.  Even if you are one of the mean girls, you know you sit uneasily on the throne, and your ladies in waiting might turn on you at any point.  It's a scary, scarring social order.  Janey won't have that.  If she is teased or excluded, she won't notice.  If she is ignored, she won't care.  She lives in her own world, which is apart from that intricate and often cruel world of girl friendships and enemies.

Janey is sad a lot, of course, but I would not say she's ever worried.  Worry has consumed huge parts of my own life, but worry takes awareness of the future, which Janey has very little of.  She vaguely knows we go to school each day, that sleep follows being awake, that there is supper and then dessert, or hairbrushing and hairbrushing being over.  But she doesn't lie awake nights worrying.  She doesn't have the brain setup to do so.  She might be scared, in the moment, or sad, or angry, but worry?  No.

Most all of us have things we want.  I want a computer that would run a game I wish I could play, a better house, money to not worry about bills, a car that I know will last a while.  The boys want better guitars, more video game systems, snazzier clothes.  Tony wants a Kindle, a Fiat, a pinball machine.  There aren't consuming wants, and we know we won't get a lot of these things, but the wanting of material things is a part of our life.  Janey doesn't have that.  She is not aware of the world of items out there she could want.  At times I've taken her to a toy store, and offered to get her a toy.  She doesn't get that.  She doesn't see things and think "If only I could have that!"  She is free from that kind of wanting.

In a second, I would reverse all this if I could.  I would give Janey the painful, regular life most of us lead.  It's worth it---I know that.  But I can't reverse it, and so, at times, I do think that there are compensations.  Maybe I have to think that, to keep from despair.  But be that as it may, I think of a life without worry, without coveting, without teasing or exclusion, without politics.  It's hard for me to picture, but it's Janey's life, for better or worse.

Monday, November 5, 2012

Tired of feeling this way

I haven't written in a few days, because I was going with the old saying---"If you don't have anything nice to say, don't say anything at all."  I don't really have anything mean to say, but I don't have anything nice to say either.  I've been depressed for a bit now.  There are days I feel better, and days I feel worse, but overall, I've had my particular brand of depression, which mostly involves having very little energy and sleeping a lot. And yes, I have a doctor's appt. next week and I will talk to her about it, but it's not the kind of depression that I think much can be done about, besides things I've already tried or am already doing.  It's situational depression.  I'm depressed about specific things, and of course high on the list is Janey.

Not Janey as a person.  I'm not depressed she is herself.  I'm depressed, I think, because I feel like I've missed some boat in helping her.  I think I've been reading too much about autism---just following news leads in my Google news section about autism.  I missed the early intervention boat on her.  It doesn't help me feel better about it that she wasn't autistic then, or if she was, it was a pretty subtle thing.  I remember her PT saying how amazing it was how social Janey was, how much she talked.  I know then she eagerly greeted the PT every day.  I don't think about things like that a lot.  Sometimes I like to almost forget those first 3 years, to tell myself that Janey NEVER could talk like that, because lately, despite all the years that have passed, her horrible regression is upsetting me more than it has in a long time.

The only reason I can figure this is the case is that Janey seems to be in a plateau right now, or maybe even another regression.  Her talking is not good lately.  She is saying less and less, and what she does say is getting turned into shorthand a little.  For example, the phrase I hear most often at home is "Snuggle on Mama's bed!"  It's her response to any kind of upsetting thing happening---a scary part in a show, a reprimand of any kind, or just some impulse from inside that bothers her.  But now she's mushing the phrase together, just looking at me and saying "nuggmamaba" or something like that, like that whole phrase is too much work.  It's like every word costs her a lot of money, and she's a saver.  For years and years and years, when I leave her in the morning at school, she gets told to say goodbye to me, and she just about never does it spontaneously.  Once she's reminded, she'll say "Bye!"  Then someone will say "Bye WHAT?" and she'll reluctantly say "Bye, Mama!" or something Bye someone else, if she's not in the mood to remember the right name to call me.  And lately I'm just wondering those useless questions---WHY?  Why is it so so so so hard for her to learn things?  Why does her talking never really progress?  Why if I look at reports or my own blog from 3 or 4 years ago, is her talking at the same level now it was then, or less?  Why does she still often have crying spells where something is obviously badly bothering her but she can't tell us why?  Why does she not progress?  WHY ISN'T SHE GETTING BETTER?

Isn't it supposed to work that way?  Isn't even autism supposed to follow those rules---you start at one level, and with a lot of work, you get to the next level?  And Janey doesn't.  Or she might in small ways, but not big ways.  And around her, other kids with autism do, other kids with other delays do.  I am confident she has the right teachers, the right therapists.  I am even confident, in my better moments, she has the right parents and brothers, that we are doing the right things, the things that should make her able to learn.  After all, we raised her two brothers so far rather successfully.  I know she has autism, I know she has retardation.  But that should not stop her from being able to learn.  Or should it?  I guess I know sometimes it does.  I've read the rare book that does admit that---that's it all not a guarantee in any way, that some kids don't progress.  But, and I'm letting the inner thoughts out here---why me?  Why Janey?  And of course, the answer is Why Not?

So probably I should have taken that good advice and not written if I don't have anything positive to say.  I'll think of this post as what I guess blogs can sometimes be---a diary other people can read, if they are in the mood to get depressed.  And I'll buck up soon, I promise.

Thursday, November 1, 2012

Janey at School

Here's a picture of Janey at her desk at school!  Yesterday her class had a publishing party.  The class had written stories about a memory that made them happy, and you could go around the room and read the stories.  Janey's teachers had made up a book on the iPad for Janey about how much Janey loves the plants that have been put around the courtyard at the school.  They had great pictures of her, and Janey could turn the pages to show the book to me.

It's always hard going to events at school, as I've written about.  This isn't anything in any way the school does.  Janey is always included.  But it's just hard being faced with the differences between Janey and all the other 2nd graders.  It really hit me yesterday.  Janey is like a toddler in a class full of big kids.  When she saw me, she ran over to me and wanted to be held.  I gave in and did so, because I know she wouldn't have stayed at her desk.  She was in her manic laughing mode, and I was trying to quiet her while the teacher was talking, although I'm sure the kids are very used to her being noisy.  Later I took her for a walk around the school, as she was getting upset.  She very much doesn't like her routine changed, and I am not supposed to be there in the middle of the day.  I mentioned this to her teacher, and I loved how she understood.  She said "but I know you'd feel awful if you didn't come" which is exactly true.  I like it when people get it, and don't try to fix things that can't be fixed.  I have to go---I would never not go to school events.  But it's never going to be easy to do so.

There's great parts about being around the school too, of course.  I get to see as I always do how many people know Janey and are so good to her, and how happy she was walking around the school.  The school is shaped like a bit doughnut with a courtyard in the middle, so it's perfect for talking a walk around when Janey needs that.  She sees people, they say hi and wait for her to answer, which is something terrific for her to work on.  The whole school is part of her education.

And that's the story of my life.  There is always some sad with the happy.  I love the school, I love my Janey, but I'd be lying if I didn't say I sit there seeing the wonderful kids in her class that have written long pieces about interesting memories and I have a deep sadness that Janey can't do that.  I see them sitting at their desks, eager to answer questions, learning so much so easily, it seems, and my heart breaks a little.  I love the Janey I have, but I still have dreams of the Janey I won't ever have.  I wish I could say otherwise, but I can't.