The season titles and other communication breakdowns

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

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

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

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

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

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

The word we don't say anymore

Even when I started writing this blog, about 8 years ago, it was still marginally acceptable to use what I will now call the "R" word.  Now, the acceptable term is "intellectual disability".  In many ways, that's a better term.  The R word meant behind, and implied that those it referred to would someday catch up.  Intellectual disability doesn't have that implication.

In general, I am not too hung up on semantics.  Part of the reason is that it often takes quite a while for the general public to catch up with those in whatever community it is that creates the word.  It is sometimes easier just to tell people straight out---"Janey is ....."  I have done that, a few times.  Generally, I resort to that when I heard something along the lines of "But all kids with autism are really, really smart!  You just need to unlock it!  Have you tried (insert latest hip treatment here)?"

However, as the years go by, I realize that both the incorrect term and the more correct one are pretty meaningless.  Yes, in many ways, Janey is intellectually disabled.  There is no question there.  Despite many, many years of teaching, she doesn't know her letters, or numbers.  She can't read or write, or really use a writing utensil at all.  She speaks mainly in short, familiar phrases or echolalia.  If her IQ was able to be tested, it would be very low.  But those academic areas are just a small part of who she is.

I don't like to think about it, but the truth is, before I had kids, I thought having a child that was the R word would be the one thing I simply couldn't deal with.  I would guess a lot of people think that.  I felt it would be the ultimate tragedy.  Now, I can say with complete honestly that I was wrong.  In day to day life, Janey's intellectual disability makes little difference in her life.  It matters far less than her happiness, her health, her safety.

I also get now that there are many, many kinds of smart.  I often say to Janey "You're so smart!" and totally mean it.  She is smarter than I am in a lot of ways.  She dances far better than I ever will.  She is good at using the computer and iPad.  She can run a lot further than I ever could.  She has more sophisticated taste buds.  She is less socially anxious.  She is a million times more musical than I am.  She has a wonderful sense of humor.  She has more fashion sense than I do.  I used to think, honestly, when people said there were many kind of intelligence, they were saying that to somehow cover up the fact that whoever they were talking about didn't have "real" intelligence.  I hate it that I used to think that.  It's not true.

So, you might ask, why even admit, why address the fact that Janey does indeed have an intellectual disability?  Well, because it does make a difference in terms of what the future holds for her.  I believe in living in reality.  The kinds of smart Janey has are not the kinds of smart that will make her able to succeed academically.  She will never get a high school diploma.  She will never go to college.  And beyond academics, she will never hold a real job, or live on her own.  And I hear already a chorus, probably mostly from my own mind, saying "You are assuming a lot there!  Don't you have hope?"  And the truth is, at this point, I think reality is more important than hope, at least hope for things that there are a vanishingly small chance will ever happen.

There are kids with autism, including non-verbal or low verbal kids, who don't have an intellectual disability.  That is extremely important to keep in mind.  But I think it's also important to admit there are kids that are indeed intellectually disabled. Sometimes, I feel like at some high level, it might be almost a conspiracy to not admit that, because not admitting it lets us as a society not truly deal with a future that is coming.  Janey will need lifelong care, and so will many, many others like her.  We can hope that isn't the case all we want, but it's reality.  Until we admit that as a society, we will not be planning for it.

In a bigger sense, I wish everyone could realize what it took having Janey for me to realize.  Being intellectually disabled is NOT A TRAGEDY.  It's not something so horrible that we have to pretend it doesn't even exist, have to say that somehow it will magically go away in the future.  It's not the end of the world.  Janey is one heck of a terrific person, despite being the word we don't say any more.

My terrific Janey

If I Had Three Wishes...

After this past Columbus Day weekend, which could be renamed around our house "Screamfest '14", I am quite drained.  Janey was happy to get back to school.  She hates long weekends.  I don't know quite how she knows, but she knows that weekends are supposed to be two days, just as she knows when it's quarter to five and Daddy should be home.  Yesterday was one weekend day too many for her, and she let us know in no uncertain terms.  I slept little last night, and today, I've been in a half-dream mode.  It led me to thinking---what would I change about life with Janey if I had three wishes?  And what would I NOT change?

The first thing I'd wish for---No more screaming.  Or, to modify that, only screaming in situations that require screaming.  I wish that for myself, of course, because screaming is very, very hard to hear, and because it limits what we can do as a family.  But I wish it more because of what it means that Janey screams so much.  She is screaming for a reason, whether we can figure it out or not.  I don't want to silence her voice---I want the no more screaming to be because she no longer feels the physical or mental anguish that is causing the screams.  I want to understand what makes her scream, and to be able to help her feel better.

Second wish---no more self-injurious or injurious-to-others behaviors.  Seeing Janey bite herself, hit herself on the head, scratch herself---it breaks my heart.  Again, I want to know the causes of this behaviors, and I want to fix whatever makes her feel she must hurt herself.  I also want her to not hurt anyone else.  I don't want to feel worried when Janey is hysterical that she is going to bite me, or pull my hair, or scratch me---or anyone else.  It's human nature to feel a little nervous about getting into a situation that has led to pain in the past, and I hate it when I'm half scared of being bitten by Janey.  I want her to not need to hurt herself or anyone else.

Third wish---I wish for better sleep, for Janey and for us.  When I've had a good night's sleep, I feel like I can handle this life, and I am sure it's the same for Janey.  When I don't get sleep because Janey is awake, I am overwhelmed and out of hope, out of ideas, out of patience.  If I could count on a good night's sleep every, and if Janey could also have that good night's sleep, well, I can't even quite imagine it at this point, but that's probably because I'm always half asleep.

The flip side here---what would I NOT change?  If I got that magic wand or caught that magical fish that gives wishes, what would I NOT wish for?

First non-wish---I would not wish for Janey to not have an intellectual disability.  That's one I would not have believed, before living this life.  But of all the things that autism has brought to our family, the easiest to deal with is Janey's learning issues.  They really just don't matter much.  I used to, before I had kids, read articles or books about children with various issues, and if they were intellectually normal, I'd think "none of the rest of it would really matter, as long as they weren't SLOW!", like it was the most important thing.  I realize it isn't.  Janey operates as she operates.  We delight in what she shows she knows, but in day to day life, the fact she can't read or do math or write makes almost no difference.

Second non-wish---I wouldn't want to change Janey's personality.  Sure, I'd love it if she was a little less cranky at times, but I can say the same for almost anyone.  I'd like Janey to be happier because that would mean we had figured out what upset her so often, but I don't want her underlying personality to be a different one.  She wouldn't be Janey, then.  She wouldn't be the stubborn, funny, musical, sometimes sneaky, sometimes silly, always surprising girl she is if she had a different personality.  She wouldn't be Janey.

Third non-wish---I wouldn't wish away the autism.  The autism is part of Janey.  It makes her who she is.  I might wish she was a little less affected by it---that she could communicate a bit better, that she could pursue the things she loves a bit more, but the autism itself?  The unique way she sees the world, the lack of any calculated meanness or judgement or jealousy she has, the gifts autism has given her, like her unabashed love of music, the community of other people with autism that she is a part of---how could I ask for that to be gone?  Wanting her to cry less or not hurt herself or sleep with more ease---I would love those to change.  I think that they could change, without changing who Janey is.  But the autism?  No.

I don't have three wishes, but I have my determination to help Janey.  I will try to make my three wishes come true without magic.  And I'll try to celebrate whatever the magic is that gave Janey to us.

How Janey's brothers see her

Janey is extremely lucky to have two amazing brothers.  William is 10 years older than her, and Freddy is 7 years older (to the day!)  I often have thought how much harder our lives would be if Janey was our first or only child.  I can't tell you what a help the boys have been over the years.  Often it's just the little things, like when I have to run down and change laundry or check the mail---countless times, I've said "Can you keep an eye on Janey for a minute?" and they have stepped up to the plate.  As they've gotten older, if Tony and I want to get out and they are available, they are the only babysitters we use.  We do that very little, partly because they are busy and partly because we can't afford a lot of going out.  When we do have them babysit, we generally pay them, because watching her is certainly a payable job, but they often offer to watch her without pay for special occasions.  They joke with her, play with her, treat her in a brotherly way that is so important for her.  They are great boys.

Over the past few years, on several occasions, each boy has said the same thing to me separately.  They have both told me they truly feel Janey has normal or better intelligence---that for whatever reason, talking and communicating is hard for her, but that they very strongly feel that inside, she is bright.  I take their opinions on this very seriously.  They are not saying it from any position of wistful thinking or from lack of information.  They know Janey completely.  They see the full extent of what she is like---the screaming, the lack of academic progress, the limited talking---all of it.  But through it all, they see something else.  They have both seen amazing things she has done, those once a year type odd moments when she shows a glimpse of what she can do.  They have also seen the day to day demonstrations of her strong sides.  They have seen her learn songs instantly and sing them back, they have seen her figure out complex baffles we have put on things we don't want her to touch, they have watched her easily manipulate the computer and the TV.  And they also see the intangibles---just the way she can look at you, the way she picks up on the mood of a room, the way she subtly knows how to get what she needs from people.

I know a lot of people think I should have more faith that Janey is of normal intelligence.  I know very well that intelligence is not an easily measured thing, and that there are lots of kinds of intelligence, and that autistic kids don't take well to testing.  But I also fiercely need to live in reality.  Janey is nine.  She rarely talks in full sentences (except for echolalia).  She is not toilet trained.  She can write her first name, but nothing else consistently.  If she can read, she generally hides it well.  I have never seen her do even very basic math skills.  She rarely responds to questions.  By most any measure, she is intellectually disabled.  But IS she?  I don't know.  But I know that having her brothers feel she isn't is one of the factors I most strongly am influenced by.

Here's some pictures of Janey with her brothers, just being happy in their presence.  She's a lucky girl to have them, and I am a lucky mother to have all three.

Counterintuitive Wins Again

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

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

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

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

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

Crying----Why? What To Do?

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

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

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

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

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

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

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

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

Growing out of autism?

This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis.  It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start.  But it certainly caught my interest.  In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic.  And Janey, of course, is severely autistic and I am pretty sure always will be.

You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this.  The study only accepted diagnoses from experts in autism.  Both my kids were diagnosed by fairly well known leaders in the field, so that counts.  But there are huge difference between them, and were from the start.

The big, big, big difference is cognitive ability.  Janey is intellectually disabled.  There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed.  She didn't walk until she was 2.  Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids.  She even was/is delayed in physical ways---she didn't get teeth until after her first birthday.  William was never cognitively delayed.  He spoke at an incredibly early age, and he was obviously quite a bright kid from the start.  I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.

Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't.  It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey.  We may have used that to react differently to him. I don't think so, but it's possible.  Janey blindsided us at age 3.  She has early intervention, but it was only for her walking delays.  It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.

The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert.  I think he had a collection of traits that made him appear autistic.  Part of that is just personality.  It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz.  He's a hard worker, and he gets very involved in what he loves doing.  That showed up early.  He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things!  And as you grow up, having the ability to get very into things isn't bad.  It is what makes experts, professors.  It's probably what has resulted in most all great inventions and steps forward in history.  I think autism is something that shouldn't in some ways be diagnosed until around age 7.  Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment.  They should.  But do they have to be called autism that early?  By the time a child is 7 or 8, it will be obvious who is autistic and who isn't.  Janey is autistic.  There is zero doubt there.  William isn't.  There is zero doubt there too.

The other message I want to put out there is that I didn't do anything magical to make William not autistic.  I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that.  I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life.  He was the one that changed.  I didn't make him change.  That sends me a message about Janey.  I am doing the best I can for her, but I don't think there is some magical key that will unlock her.

I look forward very much to following this study as more information comes out.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

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.

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.

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.

Ann Coulter made me cry

I am not a political person.  I am what would probably be termed a one-issue person, or maybe two issues---public education and autism support.  I have never watched Ann Coulter, although I am kind of vaguely aware she's some kind of political speaker.  I didn't watch the debates.  I look up enough information on each candidate's views to see where they stand on the issues important to me, and vote based on that, regardless of party.

That is why I was surprised at my reaction to reading about what Ann Coulter tweeted after the debate.  You can read about it here----  link  -----  She used the shortened form of the word "retardation" as an insult to Obama.  I usually don't let things like that bother me; the whole "sticks and stones can break my bones but words can never hurt me" bit is something I believe.  But something about this one really got me.  Why would a public figure, albeit public for being in the media, feel it was okay to use that word as an insult?  And it makes no sense.  It isn't even a case of someone speaking the truth in a harsh way.  But even if it were, WHY IS IT AN INSULT?

My daughter is retarded.  She is autistic and retarded.  I don't give that word power.  It's a  true word, not the most politically correct one to use, but a true word.  Why in the world would that ever be an insult?  It means she has trouble learning, and probably always will.  It means she is behind other kids in terms of being able to talk.  It means in her case she can't read or write or do math.  It says nothing about character.  It doesn't mean she's a bad person or even a good person.  It means something about how she learns.  Do we say "blind" as an insult?  Or "deaf"?  Or "tall"?  Or "blue-eyed"?  Of course not.  They are just descriptions.  Why would you think that using a word that is a way to describe my daughter's intelligence is an insult?  It just hurts.  It feels like I would feel seeing someone kick a puppy.  It made me feel like I was being punched.

Here's a picture of my daughter.  I invite Ann Coulter to come to my house and see her, and call her that to her face.

The Political Incorrectness of Negative Emotions

I've been reading a book to review for Amazon called When We Were the Kennedys. I haven't finished yet, but can already say it's a great book. It comes out in July, if anyone is interested. Anyway, although it's not the major point of this memoir, the book talks about the author's sister, Betty, who "in those days was called retarded". As I bet most parents of kids with what we now called special needs do, I compared her to Janey. She was higher functioning (another now term) than Janey---she went to a regular class, although she in no way kept up with the other kids, she could answer questions and write her name and knit a little.

What struck me about it all was how it was then (in the early 60s) okay to express that having a child like Betty was in a lot of ways very, very hard. It was okay to think of it as a tragedy, in a lot of ways, and for other people to feel sorry for the family. It didn't seem like people were told to see Betty as a blessing or as a treat from God for being good parents (although the family was very religious and did seem like very good parents). Betty was loved, but it was not presumed that she was somehow sent to teach everyone lessons in tolerance and love.

Today, I think there's a huge amount of pressure to think positively about disabilities. And that is good, in a lot of ways. I wouldn't want people seeing Janey as a tragedy, or people just shaking their heads and assuming that there's nothing that can be done for her. But in other ways, it puts a huge amount of pressure on parents. It isn't even politically correct in most cases to say truthfully that Janey is retarded. "Retarded" is a bad, bad, bad word. You can say "developmentally delayed" or "cognitively challenged" or terms like that, but the problem can be that no-one quite knows what you mean. I still think often of when one of my oldest friends, that doesn't see Janey often, was shocked when she realized how behind Janey was. She had equated autism with what a lot of people do---someone quirky and brilliant. And I said the bad word. I told her---Janey is retarded. I feel guilty writing that, like I'm being horrible. But it's true. It's a negative word, but why is that unacceptable? It's not a blessing that Janey has so much trouble learning. It's not a test, it's not a puzzle to be figured out. It's something that is wrong with her brain, and makes it very hard for her to learn. I don't see that as a positive thing.

If you do a quick read of a lot of blogs about disabilities out there, you can see the pressure put on parents to be positive. I think there's a lot that doesn't get written down. Or maybe I'm the only one. But I don't think so. I love Janey, I often delight in Janey, I find her fascinating and adorable and I in many ways love being her mother. But all that being sad, I have huge amounts of sadness, anger, discouragement, depression and frustration over how life with her is. This morning is an example---she screamed from the time she woke up, she fought getting dressed and her hair done with tooth and nail, literally, she kicked things around in the car, she ran away from me in the schoolyard, she tossed her shoes away as I tried to get her into her classroom. I don't feel positive about that. I feel worn out, discouraged, depressed. I feel those feelings for myself, and even more for Janey. I worry about her life. I despair when I think about her when I am someday gone.

There was so much about the past treatment of people like Janey that was awful. There was no special education, there was little understanding and life for the Janeys of the world was bleak. I'm certainly in no way at all wishing it was then. But I do wish it was still okay to not be positive now and then, to openly say "This is extremely hard. This is not fair to any of us". And so I'll say it.

I don't know how you do it

"I don't know how you do it" is something I hear fairly often. It doesn't bother me, anymore anyway. I know it's something people say when they don't know what to say---it's meant as a compliment. I used to always think to myself "What choice do I really have?" but lately I've come to think of it, in my mind anyway, as a question---maybe not one that the person actually consciously wants answered, but a question to themselves---"Could I do it? Could I handle it?" Today I thought of an answer. The answer is "It's both harder and easier than what you would think".

Let's take the easier first. It's easier, in short, because you get to get used to it gradually. If I had no time to work up to it, if someone said to me "I'm about to give you a 6 year old daughter. She's going to be autistic. She will also be retarded. She won't be able to talk much, she will cry a lot, she will have extreme trouble with learning anything academic. She will need constant supervision, because she will be into everything and constantly in danger of hurting herself someone. You'll have her for life"---well, I would probably be eying the nearest high bridge. But I have had a while to get used to it, and I've learned that much of it really isn't that bad. When Janey is happy, when we can figure out what she wants and are able to give it to her, the autism and retardation matter very little. The retardation, maybe at this point not at all, to be honest. It makes little difference in the scheme of things if a 6 year old knows her letters, her numbers, if she can talk well, if she is understanding complex ideas. In the future, it will limit her, but right now, she is who she is, and just the fact she doesn't seem to learn well in some areas doesn't much bother me---most of the time. And the autism, at least parts of it, are not that bad either. The social parts are just her. She isn't going to say goodbye or hello readily, she isn't going to make great eye contact all the time, she likes the same videos over and over---I can handle those things. And in many ways, she's a delight, when she is happy. She is beautiful and funny and loving much of the time. She brings us a lot of joy, often. It's not like our lives are ruined by her (at least most days we don't feel that way) She is who she is, and that's the part that is easier.

But it's harder than you would think, too. What is harder than people picture is the endlessness of it. People get tired after taking care of her for an hour or two. And then they get to pass her along. They get a break from her demands, her tears, her confusing requests (things like handing me a bowl and saying "BOWL" a hundred times to try to get me to put some unknown thing in it), her constant quest to get into the fridge and take things out and toss them around, or to throw all her DVDs on the floor, or to open her diapers and make a mess, or to try to escape, or to do any of the things she does. But we don't get a break, except for school (which we are glad to get, let me tell you). Not ever. She is our responsibility around the clock. Imagine when your child was at their worst terrible twos---no impulse control, prone to sudden tantrums, etc. Then imagine that lasted...forever. And that your child was too hard for anyone to watch outside the family---that they never got invited to other people's houses, not because the other people are mean or don't like her, but because they are scared---they don't think they could handle her, and they might be right. That is the part that is harder than anyone can picture unless they have had a child like Janey.

But still, there are people that I would ask the How Do You Do It question to. People with medically fragile children, people who know they could lose their child, people who are single parents with an autistic child, people who have a child like Janey but not a school that they can trust. And they would probably say to me what I am saying to others---it's both easier and harder than you think.

Developmentally Disabled

I've heard a lot of discussion lately about the word "retarded". I've touched on it before---in some ways, I wish it could be reclaimed as an acceptable word. I would NEVER want it used as an insult, toward Janey or toward anyone else. One of my proudest parenting moments ever was when Freddy told me that when kids at his school were throwing around "retarded" insults to each other, he stepped in and said "Hey, guys, don't say that. I have a sister who really is retarded, and it's not something to joke about". That took a lot of guts. And he gets it---that in the right situation, it's a descriptive word of a developmental level. More so than one of the more used euphemisms, "developmentally delayed". I don't like that, because it implies that at some future date, the child will catch up. If a bus is delayed, that doesn't mean it's NEVER getting there. And of course, like every mother on earth, I dream that someday, Janey will catch up completely, go to Harvard and become president. But I don't think she will. I think she will make progress, but I think she will always be behind. So if it's not correct to say "retarded", perhaps "Developmentally Disabled"? That's a mouthful, but more accurate, I guess.

And why does it matter? Well, because her other label, autistic, includes such a huge range. I know people "on the spectrum" that are brighter than most of us would ever dream of being, in our wildest dreams. I have a son originally considered to be on the spectrum who is currently first in his class. And the wide umbrella of the spectrum means that saying Janey is autistic sometimes leads people to assume she is a far different person than she is. You would hope they'd just get to know her and know who she is, but not everyone in the world is going to be able to do that. And I've actually had someone say to me "Oh, kids with autism are so smart!" And some are, and I'm glad that people know that. And Janey is too, in certain ways. But in the ways that get graded, she is not.

And so again, why does it matter if people know that? Well, imagine you had to explain to a child they needed to hang up their coat and sit down for lunch. It makes a big difference if the child can understand a statement like that or not. Or if you wanted them to pick their name out so they knew where to sit. You would want to know if they are just being stubborn or shy when they don't, or if they can't read. What if you assume a child of 6 should know not to run toward the road, or pick up sharp objects? What if a child is considered rude for not answering questions? With all those situations, it would be helpful to have a quick way to explain that Janey can't read, or understand much of what is said to her, or follow safety rules. Helpful, but I guess not crucial. I've used the short answer version quite a few times---"Janey is autistic and doesn't talk much". That usually works.

I've noticed lately that Janey is doing a lot of things two year olds do. She wants to take off her clothes a lot, which is a "two" thing, she dumps out water or small items all the time to see and hear what they sounds like on the floor, and she is enjoying saying "NO" more. Today I took her to get Pringle Chips, her favorite treat. I found them on the shelf and said "Is that what you want?" and she answered surprisingly directly---"NO!". She then put on quite an acting job, and looked over every other bag of chips at the store, and finally reached for the very can of Pringles I originally showed her and handed it to me. That's two for you. It was fun to see! And that is making me think again about the "developmentally delayed" label. Maybe it does make some sense, if it's kept in mind at some point the delay may slow almost to a halt. If she's 4 years behind now, we can't extrapolate and think that when she is 20, she will be like a 16 year old. If we do ratios, maybe she'll be like an 8 year old or 7 year old. That would be good.

So, who knows, really? Like so much, the right words, the right term, the right predictions---they are all hard to come by. Janey is Janey.

Retardation

That word, retardation, and the related one, retarded, are not well liked these days. Lately, though, I've been using them more, and trying to reclaim them as acceptable. Why? Because they say something clearly that seems to be like the Voldemort of special needs talk---it that can not be spoken. Autism is fine, but people often say to me "She's autistic, but she's very bright, right? She's probably going to be a professor or a musician or something? She's not...slow...is she?" Well, I can't predict the future, but I can say as of right now, Janey is retarded. It's not a evil word. It means she is behind intellectually. I think at one point it was probably the politically correct way to say it---it meant she might catch up some day, she's just slower. But that's not how it ended up being used, and when I say it, I mean it as it's usually thought to mean. I don't think Janey is ever going to catch up. I've never been told her IQ outright---she's been tested several times during studies, but they generally say it was hard to complete the test, or her non-cooperative nature makes the results hard to say, etc. But I know if they did say them, they would be very low. She is functioning in most ways about like an 18 month old. She talks a little, she understands simple commands, she knows familiar people, etc. But she can't consistantly identify any shape, color, letter, number, word, she can't understand concepts like "yesterday" or "Christmas" or "surprised" or "farm". At school and at home, we have been working on those basic concepts for 4 years at least. She hasn't learned them. She might someday, but I am unsure.

So why do I say all this? To put her down, to be depressing? Not at all. I saw it because I prefer to work with the truth. Janey being retarded doesn't lessen her worth as a person, doesn't make me love her less, doesn't make me try less to help her. On the contrary, if I know what can be reasonably expected, I will work all the harder to make sure she accomplishes that. If I know that it's unreasonable to expect her to get concepts like "wait a minute!" I will find another way to get that point across. I won't frustrate her with workbooks that are far beyond her. I won't ask her questions she just can't answer. I will find a way to encourage her strengths---her singing, her love of rhyme and poetry, her dancing. I will love the real Janey, not my dream of a different Janey.

Holding my breath

I haven't written in a few days, because of my extreme fear of jinxing things. The last 5 days or so have been pretty good! Janey hasn't been screaming or crying much at all. I think the higher dose of the medication is working, or something is working. She just seems happier. When she starts to get upset, it's much easier to get her back and calm her down. It's so wonderful to have a day without extended crying times. Along with the medicine, it might also be partly just adjustments we have made. I'm backing off some on taking her out many places---I think she needs some time mostly at home, very predictable routines. Not totally, but a lot of the day very low key. My parents were here yesterday and got to see a calm Janey! (and hear our stories about the awful time a few weeks ago) We went to see my friend Fab a few days ago and Janey was happy almost the whole time, and saw my friend Amy a bit ago also and had a very good time, and got to see Janey playing with her daughter, and actually talking back and forth a bit (with her confusing reversed pronouns---they were playing with a water squirter and her daughter said "Do you want me to squirt you?" and Janey said of course "Squirt you!"---which reasonably the daughter replyed "She wants me to squirt myself!") The nights have featured pretty good sleep, and overall it's been a nice stretch!

As for talking and so forth---I feel like it's been reasonably good. But I think I only compare Janey to herself. When she says something I haven't heard before, or does something new, I get very excited. Sometimes the people around me seem a little perplexed as to why I'd be that thrilled to see her doing something most 2 year olds probably do with total ease. Yesterday she asked for water "in a glass"---she always adds that, I'm not sure what she thinks we usually give her water in---and then glanced at the fridge and added "ice---want ice" which I thought was a great sequence---asking for something, and then adding on an appropriate phrase. But I realize that's the kind of talk probably most 18-24 month olds would handle with ease. The other day I asked her to draw a circle, and she drew something definitely round. I was so happy. I realize lately after the horrible crying times, I think something changed in me. I stopped thinking as much at all about her delays and autistic behaviors. Not completely, of course, and I will think about them again many times, but for now, if she's happy and making even very minimal progress over her own past marks, I am happy. I'm only holding her up to herself. Tony is feeling the same way. It must be a landmark for a lot of parents of children with retardation---the moment you realize that your kid is your kid---they have their own measuring stick and it's not the same as other kids, but you can still feel happy about the tiny steps they take, and laugh with them at funny things, play with them at their own level, find joy in what they enjoy, etc. I'm being uncharacteristically cheery and maybe a bit Pollyannaish, but for once I will let myself be that way.

Long Week

The last week was fairly tough. Janey was having a bad week---awake in the night crying, not talking much, upset all the time. Things weren't going well at school either. Finally Friday I kept her home, just to give the teachers a break and to let her do nothing all day. It seemed to break the cycle a little. The school called mid-day, actually the woman who is her ETF, to talk about how she was doing. They all had been concerned about her mood swings, and I had finally mentioned something about it in a note to school, and now they all wanted me to call Dr. Marshall, her pediatrician, to ask him about having her evaluated for bipolar disorder or manic-depression. I did call him, although it was a hard call to make, and I have numbers to call tomorrow of two psychiatrists. I have thought deep inside for a while she might have something like that, but it's along with the autism and the retardation, so it's going to be hard to diagnose and treat if she does, and I am still not feeling very up on medication, which confuses everyone as I've always been someone that believed in medication. But Janey is only 5, and I have had some bad experiences with drugs I felt were carelessly prescribed, including the Aldomet during my pregnancy which I truly feel is the cause of many of Janey's issues, if I might be totally honest. Also Freddy's racing heart and possible drug induced Long Q-T syndrome after his bad asthma attack. So I am not going to trust a doctor on medication unless I really look into it quite a bit first. And I also don't know how it can really be separated---does she get upset because she can't explain what's wrong? Can she not explain what's wrong because she's upset? I feel sometimes like people want other people on medication because it's a way to feel like something is being done, and if you don't do it, they can kind of say to themselves---"Well, she won't let them give her medication, so she has only herself to blame if Janey is that tough"---which is hard on people, but as I've said lots of times, here is the only place I pour out my heart about autism issues.

Then yesterday we got a Fex-Exed report from the Mass General study we have been in, about Janey's testing. Talk about a downer. Pretty much, she tested as low as you can test on almost every aspect they tested--- less than the 1st percentile. I think they were using a test for "normal" kids her age, and it really couldn't even test her, she was too low functioning. Even areas like her receptive language that I had thought she did fairly well on, she really didn't. It was a little bit of an eyeopener. It is making me think we need to rethink how she is being taught and what our goals should be. I am starting to think her learning things like colors and numbers and so on is not really a realistic goal. I've thought for a while that her speech is a little deceptive---because she does talk, but mostly in set phrases and delayed echolalia, people think she has more potential than she actually does. I think she talks as much as she does because we are all huge talkers, and that is where she gets constant stimulation---verbal areas. If it weren't for the residual speech she has, I think she would be seen more realisticly---as a child that probably is moderately retarded and needs to mostly learn life skills. And I think she could do well learning those, and perhaps someday some very basic academic skills.

I am facing the things that are toughest for me---being sure of my own convictions and not being swayed by the disapproval of others of the routes I might choose to take with Janey. I know that I know her better than anyone, I love her more than anyone except Tony, and I want what is best for her. So why is it so hard for me to just be sure of myself in terms of what I choose to do with her? No-one else lives with her day and night. If I ever have enough belief to say prayers, it will be prayers for the courage of my convictions.

Janey's physical and my talk with her pediatrician

Janey had her 4 year physical yesterday (about half a year late). All the health things were fine, she is growing slowly but steadily. But I decided to pin down her doctor a little more about his opinion of her---I asked him what he thought I should be doing that I wasn't, whether she seemed typical of children with autism to him, what his impressions were. He spoke carefully and said to him she seemed like a child with global developmental delays, with some autistic characteristics, such as her speech patterns. In layman's terms global developmental delays means basically that she is retarded, to use an old and now not correct term. And surprisingly, even though he said that on my birthday, I was not really sad to hear that opinion. It is pretty similar to my own opinion. She certainly might be autistic, but she is also quite delayed in many ways. She seems to have a great deal of trouble learning some concepts, and does not catch on naturally to things like routines or natural flows of life. I asked him about ABA and he said he wasn't really the person to ask, but usually it is not as effective with kids that are globally delayed. That went along with a good book I had read about how children with autism learn, that in some cases you just can't push a child to learn things they are not ready to learn, and often the only way they have of reacting to that kind of pushing is to act out, as they can't explain "hey, this is just beyond me right now, don't push me" She does have her areas of strength, certainly music and perhaps auditory memory, and they might really help carry her far, but I think she might always be delayed to some extent.

Another thing I did was insist he give me the report from her seeing the neurologist a whole year ago. It wasn't that illuminating, mostly it was just her observations of Janey and what we told her about her, but at the very end it gave her guess as to the diagnosis---Landau Klippel syndrome, or acquired epileptic aphasia. That was later ruled out by her totally normal EEG and MRI. But it upset me to see it there. I had asked the neurologist right out if she thought Janey had Landau Klippel and she has said no, all the while, that was exactly what she thought. L-K is a serious disorder where all of a sudden a child loses the ability to communicate and starts having seizures. Sometimes it's self-limiting, and stops at in the teen years, after the damage has been done, but sometimes not. I'm glad that isn't what Janey has, but there are still so many unanswered questions and probably always will be.