Thursday, November 28, 2013

Thankful

Today is Thanksgiving Day in the US, and I am indeed feeling thankful.  Here's some of the reasons why---

1.  I live in the right time in history.  In the past, Janey would not be able to go to school.  We would have been blamed for her autism, or we would have been told to put her away and forget her.  Or worse.  Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.

2.  I have a wonderful husband.  Tony, I couldn't do it without you.  Literally.  I think I'd be dead by now.  You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days.  You are there for the good times, too.  You make her bacon whether she eats it or not, just because she likes the process.  You sing with her, recite Three Stooges with her, delight in her good moods.  You are amazing.

3.  By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head.  The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.

4.  Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.

5.  I am so thankful for music, and for Janey's love of it.  The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.

6.  Modern medicine.  I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it.  I'd have died long ago from preeclampsia when pregnant with William.  Tony wouldn't be here without insulin.  Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven.  And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.

7.  All of you, and the internet that allows us to connect.  Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls.  Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there.  That's pretty darn amazing.

8.  And of course, I am thankful for Janey herself.  Janey, you are one terrific girl.  You are beautiful, fascinating, mysterious and so often, a joy.  You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while.  I love you, Janey.

Wednesday, November 27, 2013

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

Sunday, November 24, 2013

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

Friday, November 22, 2013

The week I won't forget

This past week, this past 5 days, really, have been insane.  Insane in that at least six huge happenings have hit me, ranging from very good to very bad.  I hate being vague here, but most of them are outside of the scope of this blog, or not my story to tell, or not something I can share for whatever reason, but it's been all over the map, starting with Janey reading and including hugely unexpected family news, unsettling health news, a great surprise present, others besides Janey needing my help and moral support and more.  It hasn't been a week I'd like to repeat, partly because I like slow and steady.  I don't like surprises or unexpected news, even good news.  I am left tonight feeling a "what next?" feeling, and I hope the answer is "nothing next".

And in writing this, I might have a partial answer to a the WHY of one of the tough parts of the week.  Janey has started being very aggressive at school, lashing out in physical, unacceptable ways.  It's horrifying to me.  It's literally nightmare-inducing, lots of nightmares night after night.  It's possible she is reacting to all the turmoil that I would have liked to think I kept hidden.  Nothing that has happened has resulted in outward scenes at home or a change in her routine, but I have been distracted, overwhelmed---and Janey always know more than I think she knows.  Perhaps she's reacting to that.

Or perhaps not.  Talking it over with Janey's wonderful teacher, we both were frustrated by the lack of a pattern to Janey's outbursts.  Looking at things from a behaviorist point of view, you want to think that if you can understand the reason why, you can avoid that situation, or work on that situation.  But Janey sometimes truly seems to do things out of the blue.  She can be seemingly as calm as can be, when suddenly, WHAM---she's lashing out.  It's scary to see.  It happens at different times of the day, aimed at different people----kids her age, younger, older, adults---it doesn't seem to have a pattern.  It seems to come from within.

I hope, like so many of Janey's moods and stages, this one passes soon.  I hope it isn't replaced with a crying all day stage, or a screaming all day stage, or a lethargic, progress-erasing stage.  I hope a lot of things.  It's one of those nights when I can't keep up the positive attitude I try so hard to keep up.  Autism is tough, folks.  It might not be in vogue right now to admit that, and there are days when it's not as tough as others.  There are days when it's almost the dream you want---an alternative kind of normal, a different but still great trip to Holland.  But today isn't one of those days.  Today it's a scary, unpredictable and tough ride.

Monday, November 18, 2013

Janey can read!

Yes, indeed, you read that title correctly.  Today was the first time that something I've suspected for a while was shown to be true.  Janey can read!  Here's how it came about...

Janey's long, long good mood seems to be coming to an end.  That's the bad news.  She had a rough weekend, with lots of crying, being sleepy in a way that seems like trying to escape her world, screaming, biting herself and so on.  Not a total loss of a weekend, but not a good one.  This morning taking her to school, I had a feeling it wouldn't be the best day.  And tonight I got a call from her teacher, and as I suspect, it was a tough day.  BUT...

Janey, when she's upset at school, often wants to take a walk.  Her school is set up like a big doughnut, so you can do a loop around it, and she was asking today over and over to take a walk.  Her teachers use that as a motivational tool---they tell her she can walk once she finishes a talk, or sometimes, once she gets 5 stars.  This time, to start the surprising stuff, she looked at her chart, which had 4 stars, and said "One more star!"  Wonderful stuff.  Then her teacher gave her an object naming task on the iPad.  This was also partly to get her distracted, as she was starting to scream, so they were going through it quickly.  The iPad showed 3 pictures, with the word written out below the pictures that was supposed to be picked.  They were reading her the word, and she was picking the pictures quickly, hoping to get done with the task.  Then Amy, her teacher, hesitated for a minute before reading one word, Dog, and Janey, without the word being read, picked the dog!  Amy held her breath and went to the next screen, and again, Janey picked the correct picture without having it read.  She went on to do ten in a row!  Far beyond anything chance would allow---Janey was READING THE WORDS!

I've suspected for a while that Janey could read a little.  She can certainly read her VHS tapes.  We have long since lost all the covers, so it's only the tapes themselves, and some of look identical except for the names of the videos.  Janey will bring one and ask for it by name---"I want Kipper's Playtime", always knowing correctly which tape it is.  But that's a very specific situation.  Now she has shown she can actually, truly read!

Amy and I both know it might be quite hard to re-create the situation in which Janey read.  In fact, right after Janey read for both Amy and her ABA specialist, Michelle, they tried to get Janey to do it for the regular ed teacher in the room---no dice!  But knowing that the reading is something she CAN do opens up a whole world of possibilities for teaching Janey, both at school and at home.  Interestingly, Janey during this tough past weekend was obsessed with a book, Dog's ABC by Emma Dodd, and wanted us to read it over and over.  She was also just spending a lot of time looking at the pages.  I wonder if something has kicked in, a code has been broken and she is getting that written words are representatives of spoken words.  

Reading is my joy.  I love to read.  The thought of possibly sharing that joy with Janey---wow.  WOW.

Thursday, November 14, 2013

Six Great Weeks---Why?

The last six weeks or so with Janey have been the best stretch we've ever had.  By far.  She has been happy, sweet, fairly talkative, fun to be with...she has been incredible.  And so of course because I'm never one to just let sleeping dogs lay, I have to try to figure out WHY.  Because I want it to last forever, against all odds.  So here are what I think the reasons are...

1.  A great classroom, with fantastic teachers, a wonderful ABA specialist, aides that get her, classmates that love her, schoolwork tailored to her, an afterschool program she enjoys..what everyone would dream of in a school.

2.  The right medication mix and dosages.  I hate giving credit to medication, but once we started the current regiment, it seems like whatever inner demons keep Janey from being engaged in the outside world, whatever torments her that we can't in any way control, has quieted down.

3.  Better sleep to some extent.  Janey's sleep is still far from ideal, but she is going back to sleep more easily when she wakes up in the night, and is sleeping a bit longer hours.  Part of that might be finally finding a meltable version of melatonin, which we give her when she wakes in the night, and part of it might be the cooler weather or who knows what, really?

4.  The "snuggle on Mama's bed" breakthrough.  When I finally figured out what Janey wanted when she said "Snuggle on Mama's bed", it made a big difference.  It means she wants me on my bed, where she knows where to find me.  She doesn't ask for this day and night, which would make it impossible for me to do and still live a life, but when she is anxious, she seems to need the security of knowing exactly where I am and that she can come get a hug when she needs it.

5.  The Screaming Room.  When Janey starts her ear-breaking screaming, which is still happening now and then during this great stretch, we have started consistently taking her into the bathroom and telling her that is the screaming room, and we will stay there as long as she screams.  It seems to shorten the spells, as she wants to do more interesting things than the small room allows.

6.  A good vicious circle.  When Janey is happier, I think we are more confident that any upset won't last for days, as it literally used to when she got upset.  So we react more calmly and perhaps firmly.  Reacting this way is impossible if she's been crying for days and shows every sign of crying for days more.  You just can't be rational in that situation, but if the crying is isolated, you can be.

7.  Luck.  You could have all of the six things listed above down perfectly, and Janey could still be in a horrible mood.  I know that, and I feel incredibly lucky this good mood has lasted as long as it has.  I don't take it in any way for granted, and I know it could end at any time.  There is so much we don't understand about our girl.  We don't understand her moods or their triggers at all well.  We are left guessing, as I am doing here.

As we head into the holiday season, I hope beyond hope that Janey stays happy.  If she is happy, all the rest is a bonus.  If she is happy, we are happy.  If she is happy, then autism and intellectual disability and all the rest matter not a whit. So I am crossing my fingers, knocking wood, tossing salt over my shoulder---whatever it takes.  We love you, Janey.

Thursday, November 7, 2013

Chocolate---or why I don't discount anyone's theories...

Usually, getting to sleep is not a problem for Janey.  Waking in the night is a huge problem, but we almost never have trouble actually getting her down for bed the first time in the night.  She usually does it herself.  Bedtime rolls around, she gets in bed and goes to sleep.  It's that easy.  Last night, though, something was off.  Bedtime came and went, and she was rocking and rolling and hyped up.  We tried over and over to get her to settle down---no luck.  Finally, ten o'clocked rolled around and she finally dozed off.  Tony and I talked for quite a bit trying to figure out what had happened, when Tony suddenly remembered.  When Janey got home from school, she ate the top off a chocolate frosted Dunkin' Donuts doughnut.  There we had it, the culprit.  We have long seen that if Janey has any, ANY, chocolate past around noon, she doesn't sleep.  It's only chocolate that does this.  She can have the occasional sip of coffee, or tons of sugar, or any other edible substance and she gets to sleep fine, but one M&M?  Forget it.

Thinking about this made me realize why I try very hard not to discount anyone else's theories or ideas about autism.  The chocolate thing seems on the face of it to make little sense.  Why only chocolate?  Why such a tiny amount?  It makes so little sense to the scientific part of my brain I tend to forget it over and over, and again let her have "just a little" chocolate.  And again and again, we see the results.  This is why, although I don't think lactose or gluten affect Janey at all, I am quite sure that they do affect some kids with autism, and those kids are helped by diets without those substances.  And why, although I don't think my children were affected badly by vaccines, I am sure that some children were.  And the list goes on and on.  I truly don't think autism has one cause.  It has lots of causes.  I have settled in my mind on the main cause of Janey's autism being a huge family propensity to auto-immune disorders, which hit her hard.  I have finally gotten a fairly solid diagnosis in my latest round of medical weird test results--Sjogren's Syndrome (here's a good article about it if you want to know more---link), which is heavily autoimmune.  This adds to my life list of autoimmune woes---thyroid disease, asthma and pre-eclampsia being the other ones.  Both of Janey's brothers have asthma, and Tony is an insulin-dependent diabetic (as is most all of his family).  All autoimmune problems, and there are more in our extended family.  The doctor explained to me yesterday that it's been found recently there is a gene that greatly increases one's propensity to get an auto-immune disease, and our family is illustration number one.  Thankfully, although I have blood markers also for Scleroderma, the doctor doesn't think I yet have that, just that I need to be very closely watched as there is a high chance I'll develop it in time.  Not to ramble about family medical issues, but that is why in Janey's case, I feel increasingly sure we know the "why".  But there's not one WHY for everyone, and there's not one cure for everyone (or any cure at all for many, many of the people with autism).  If I hear about a miracle breakthrough for one child, I am thrilled for that child, but I don't assume it will translate to helping other kids.

I very much understand why, if you had a child that someone got cured by some diet or treatment, or if you had a child that you were sure had autism caused by a vaccine, you would want to get the word out, and you would feel frustrated that everyone didn't try the diet, or rally against the vaccines.  You love your child, and you also want to help others.  When I keep that in mind, I can understand some of the strong emotions out there regarding treatments or cures.  I can listen to them, and accept that they did help some kids, and also feel secure in my own convictions about what hurt and what helps Janey.  I'm sure many kids like Janey could wolf down a pound bag of M&Ms before bedtime and do fine.  That doesn't mean that I am deluded in my belief that one single M&M can cause a sleepless night for Janey, and it doesn't mean they are deluded in thinking it doesn't affect their child.  We are both right.  We know our kids.  We have to all work together, no matter what got us to this autism life.

Saturday, November 2, 2013

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.