Autism Awareness Day---the adults with autism version

 I've had this blog since Janey was three and first diagnosed.  Now she is 19---hard to believe.  That's a lot of World Autism Awareness Days under our belts.  I was thinking today how my awareness wishes for the general public have changed since she became an adult.  

First of all, there's just that---she's an adult.  There seems to be thought out there that autism is something for children.  I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic?  They just somehow disappear?  No---they are still around, still autistic, still in need of services and help.  

I remember thinking when Janey was getting close to an adult that I wanted to be sure to keep writing about her, to help in my small way to raise awareness of autistic adults.  But as you might have noticed, I write far less than I used to.  That is tied into something else I'd like to make people aware of.  As the years go by, there is less new news.  I might be negative and say there is less hope---but that's not really it.  There is less urgency, somehow, to DO something, to FIX something.  That is an awareness that doesn't need a special day for us to arrive at.  If there is something Janey isn't doing at this point, it's unlikely she will be doing it in the future.  And that's okay.  

My father asked me something the other day that made me think.  He said "You must sometimes have some sadness and regret over things that Janey will never do".  And I realized---I don't.  I don't think a lot about what Janey won't be able to do.  What comes into my head often is the phrase "That's not her path".  It's like how I don't regret that I can't fly, or that I'm not an astronaut, or a world class figure skater.  I was never going to be or do those things.  I don't regret what was not my path, and I don't really feel regret for Janey that she's not going to do things that were never her path---live on her own, get a job, get a high school diploma, go to college.  She has her own path.  That's something I'd like to make people aware of---that everyone has their own path, their own way through life, and we don't all need to have the same milestones along the way.

Lately, much of our life is bureaucracy, the endless series of obstacles to overcome and hoops to jump through to get Janey what she needs as an adult.  THERE'S something I wish people were more aware of---how hard it is to get even the smallest amount of help for people like Janey, except for school.  For example, we are working on registering her for services when she's 22.  She is 19 now, so it might seem early to start, but believe me---it's not.  First, we had to do an endless form and send in a huge amount of paperwork to prove there was a need for her to get adult services.  Then, we got requests to send even more---more reports, more proof of her autism, more IEPs, things like that.  THEN we got assigned a worker, and we took Janey to meet her.  The next day, I did many hours worth of phone interviews about Janey's development and current level of functioning.  You might think all that would be enough.  But of course not.  The worker told us we need a letter from her psychiatrist outlining all the reasons that Janey meets the definition of autism---despite her being diagnosed as such at least 3 times in the paperwork we already sent.  We are working on getting that letter, but getting no response from her psychiatrist at all.  Once we get that letter, if we ever do, finally she is formally put in to MAYBE get services---all this is just part of the application.  Once she is approved (and I would certainly hope she will get approved, but who knows?), we get assigned ANOTHER worker and we start trying to figure out if there are actually any programs out there for her (which it is very possible there won't be, from what I hear),

My boys both went to college, and got good financial aid, and I swear that was about 10 times easier to apply for than all this is.  You could spend 5 minutes with Janey and know she needs lifelong services.  Tony and I are fairly good at paperwork, and we are about out of our minds at this point.  What in the world would someone who might not read well or speak English well do to get this kind of help for their child?  WHY is it so hard?

And this is just ONE of the tasks of adulthood.  We also had to apply for Social Security for Janey, which wasn't quite as complicated but took over a year to be approved, and we had to get guardianship for her, which was another nightmare of complexity and is something we have to repeat EVERY YEAR.    I don't think it has to be this hard.  I think there's an impression out there, and in fact people have said to me that they think people with autism "get all kinds of help and services", like you get the diagnosis and suddenly help and money and respite and programs are all provided in abundance.  I'd like people to be aware that most certainly is not the case.

However, of everything I wish people could be aware of, the biggest is this---Janey is an amazing person.  She is our joy.  She loves so many things---good food, good music, good (in her eyes anyway) videos and movies.  She has a smile that is so wonderful it's impossible to describe if you haven't seen it.  She's funny and beautiful and in her own way, very smart.  You might look at the bare facts about her---a recorded IQ of 30, very little useful speech, not fully toilet trained, unable to read or write---and picture a tragedy.  The tragedy to me is that anyone would think that.  She is everything to us, and she deserves a full and interesting life as much as anyone does.  

I wish sometimes everyone who is responsible for any kind of public policy that affects the disabled could meet Janey.  And meet all the other amazing people out there that I've met because of Janey---I wish they could see for themselves the actual people they are making decisions for.  Maybe I'm a cockeyed optimist, but I think if they could, they would do all they could to make the world a place where Janey and all the others like her could not just survive, but thrive.

Mostly just pictures!

I took a bunch of pictures of Janey tonight, and thought I'd share them in a mostly just pictures post!  We have a routine with taking pictures which she loves.  I pretend to tickle her (she doesn't like to be actually tickled, but she loves me to say "tickle-tickle!" with my hands in tickle position), and then I take a picture, to get a smile!  Not that I only want smiling pictures of her, but I love seeing her smile.

Here's Janey playing with kinetic sand, a wonderful present from a dear friend.  It's the first toy in years Janey has had an interest in, and she loves it.

Smiling in the sunlight

I love to see my Janey happy.

Another big smile!

My shadow taking her picture!  Janey has the blessing or curse to have the family hair, thick and very curly.  Her brothers both have it too, as do assorted members of my family (not me!)  It changed when she was about 7 from being straight and very blond to being ash blond and curly.

Janey pointing!  She doesn't point a lot, except at herself as a way of saying "I want that", so this was a lucky shot.  She was wanting Tony to hurry up and come down to the driveway to take her for a car ride.

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

A good day, then a bad day

Saturday was the good day.  Janey was happy pretty much from morning to night.  We hadn't had a day like that in several months.  It was wonderful.  She was cheerful, talkative and laughing---a real laugh, not the manic strange laugh she sometimes does.  She interacted so nicely with both brothers, and she sang and danced and was a joy.

During the day, Tony and I did a lot of knocking on wood and reminding each other not to think a corner had turned.  We enjoyed the day very, very much as it happened, but we tried not to get our hopes up.  I think we did, though.  Janey had been on the new mood stablizer medication for two days, two doses, and even though she's on a very low dose to start, we somehow hoped it was doing something, making her feel better.  Maybe it was.  But...

Today, Sunday, was awful.  It was right back to the typical bad days of the past few months.  Janey screamed a great deal, smashed her fists on the TV and the computer when they annoyed her, tried to hit us (we are getting better at being guarded and didn't get badly hit) and cried for hours.  It was a very tiring day.  It felt more discouraging than other bad days recently, almost, because there had been that little bit of hope.

Of course, I am trying to say the right things to myself, that things don't change instantly, that just because today was a setback doesn't mean the new medication might not be helping, that even "normal" kids have ups and downs---all those things I should think.  But I don't think I'm as good as bouncing back as I used to be.  The events lately make me see how bad things can get, and how little the medical or psychiatric profession can really do.

I've decided to give myself next week, Christmas week, off from anything autism related that isn't strictly about daily Janey care.  Most especially, I'm going to not think about the Mass Health debacle.  You might remember how when I gave our health plan Janey's new Mass Health card (state insurance for low income or disabled people), they freaked out and said it was the wrong kind.  After a lot of research and talking to an expert who luckily was holding a meeting at Janey's school, I think I figured out what happened.  When Tony talked to a financial person at Children's Hospital, he told her our income, and she said that when we first applied, we would be refused, and then we would have to do a special appeal that gave the details of Janey's disability, so she would get a special type of Mass Health for children with disabilities.  However, I don't think the woman realized we have 3 kids, not 1, and our income was actually within a range where we qualified for state help without Janey having any disability.  So the insurance was approved for her with that initial application, but approved as a type that is used as a primary insurance, not the special disability kind.

If the above paragraph confuses you, you are not alone.  I guess fixing this kind of mix-up is extremely tough, and requires all kinds of sending papers here and there and somehow getting through to the right people.  I wish I had gone with my feelings over the past 10 years and never applied.  The expert also told me that both insurances, our federal Blue Cross and Mass Health, don't cover special autism services anyway.  This is despite the fact there is a federal mandate for insurances to cover autism services, but there are many, many exceptions, and strangely enough, federal Blue Cross is one of them.  So there you go.  It's another example of what might be perceived by those outside of the autism world as "all those services out there you can get", which is reality either don't exist or are not accessible.

Despite the discouraged tone of this post, I am doing fairly well.  I am not dreading Christmas---I am actually feeling a bit of spirit, more than in the past few years.  Maybe it's because, as the song says, "I need a little Christmas"  Maybe it's because so many people have been so kind to me over the past year, and even when things are this tough, that has given me an inner resolve, an inner core that I am able to reach to most of the time.  Maybe it's the music, which even on Janey's worst days is one of her favorite things in the world.

Here's a picture of Janey's smile, from yesterday.  Her beautiful smile, even on days when I don't see it, is another reason I keep getting up on the morning.

Screams and Smiles

That's the story of the past week.  Between the screams, there's been a lot of smiles.  Or depending on my mood, between the smiles, there's been a lot of screams.

Today, it's the screams I'm hearing.  Janey was up a good part of the night, screaming off and on.  Tony was my hero and let me sleep through much of it.  She went back to sleep, as she seems to like to, left to her own devices, about 8, and slept until 9:30.  I had coffee and a breathe.  Then, awake, screaming.  I gave her a shower, and she seemed somewhat settled down.  So I tried to sneak in a sink full of dishes, just because I like that kind of wild and crazy fun.  I put on music, because dishes are the one time Mama gets to listen to whatever she wants, and what I wanted was some showtunes, which Janey enjoys too.  We had a good time dancing to "The Lonely Goatherd"  But the next song, "One" from A Chorus Line, was not to her liking.  So she had a scream-fest, went into the living room, put on a video, got mad at the video and pushed the VCR and DVD player off the shelf.  They didn't break (they are low to the ground) but she knows very well how we feel about that.  I was at a low ebb and screamed back.  I told her to get on her bed for a time out.  She had a funny look when I said that, almost a happy triumphant look.  She had gotten to me.  I guess every kid like that a little.  I managed to finish the dishes and she only got up from the bed about 6 times, and went back each time I told her to.  Then I couldn't make the time-out last any longer.  So she got up and, just for fun, started screaming again.  That's been our morning so far.  Now she might be gearing up for a nap, which I should not let  happen, but I am going to let happen.

A few days ago, we had a great day going to NH to the camp (Maine talk for a cabin on a lake) of old friends.  I saw people I hadn't seen in 20 or more years, and had a wonderful time.  Janey, for the most part, was good.  They had a couple boats, and she got four boat rides, her favorite thing on the earth, I think.  Everyone was good to her and to us, and she was happy almost all of the car ride, or asleep (2 hours each way)  It felt like a near normal person day, except for having to watch Janey every second and except for the few times she lunged at someone or pulled their hair (which they were so kind about, thank you, Mary!)  We never can quite pass for a normal family, but we can almost pretend for minutes at a time, like when she was sitting in bliss on the boat.

Summer school starts on Monday.  I wish I didn't long for it so much.  I wish I had been able to stick to my original plan and not send her, but I don't think I would have retained my sanity.  I hope it goes well.  She will take the bus, so I won't see much of what is going on.  Which again, I feel guilty about.  But I am starting, a little, now and then, to realize that I do really have to think a little bit about not losing my mind, or my health.  Caring for Janey is endlessly tough.  It really is.  I can tell myself it isn't, but it is.  Seeing her in NH, alongside the adorable 4 year old daughter of a woman I've known since she herself was little more than 4, I was hit a little hard with the difference between Janey and other kids.  Which I am sure anyone who has spent any time with her thinks "How could that not be something she sees clearly every second of the day?" But we all play games with our mind. I think when I really let myself see what a day is often like for me, it's, as I think I've said before, like when cartoon characters realize they have walked off a cliff.  They are fine until they look down.  I have been looking down lately.  I probably have to.  But sometimes I'd rather live in the fantasy world without gravity.

Janey's Mysterious Mind and Memory

I wish more than almost anything I could go inside Janey's mind.  I wish I could do a mind meld, like Mr. Spock, and just for a little while, see what her thoughts are like.  It would help so much in making decisions about her.  I try hard to believe in one of the latest catch phrases "assuming competence"---I try hard to assume that Janey understands everything and has a huge amount of untapped potential.  But there are days when it's hard to keep up that belief.  It's hard to understand why, if she does have this potential, her talking doesn't progress, her learning remains for most areas very, very slow, her toilet training seems to have permanently stalled.  And of course highest on my mind lately---why a school full of people doing their absolute best for Janey for seven years have not been able to teach her enough for it to seem like the right thing to keep her there.

A few things happened this past weekend that made me realize how mysterious Janey's mind is.  One involved a popular toy---a Pillow Pets Dream Lites stuffed toy.  About two years ago, we saw an ad on TV for these pillow animals that light up and put stars of light onto the ceiling.  Janey, in a hugely rare moment for her, said "I want that"  I really have no idea why I didn't get her one.  I guess it seemed like a very expensive and somewhat silly toy, but I can count on one hand and have fingers left over how many times Janey has actually asked for a toy.  I should have eagerly grabbed the phone to order one.  Maybe we were feeling extra pinched for money, or something---I don't remember.  However, this past weekend, I saw a Dream Lite dog at my favorite thrift store, still in great condition, lighting all up.  I asked Janey if she wanted it.  She was half asleep and not in a talking mood, but she gave a half nod, so I tossed it in the cart.  When we got in the car, Janey suddenly said something I didn't understand at first, but recognized as an unusual original sentence.  I asked her to repeat it, and she actually did---"I want my toy!".  Wow.  Tony went through the bags and found the pillow dog right away.  Janey spent the car ride home pushing the button to turn on and off the lights.  Since then, she has kept the toy close.  She isn't fanatically in love with it, but it's obvious she has more interest in it than almost any other toy she has.  And I keep thinking---she really did see something she wanted, years ago, asked for it, saw it again and remembered it, and made the effort again to make sure she had it with her.  There are times that would seem out of her reach.  It's re-taught me something I keep having to learn.  If a child that almost never asks for any toy asks for one all of a sudden, just get it!

Janey was overall in a grumpy, sleepy mood last weekend.  I hadn't seen her smile in days.  And then her brother William came home for a surprise afternoon visit from college, and Janey was obviously thrilled.  She smiled nonstop for the rest of the day.  It's not like she rushed over to him and hugged him---she doesn't provide the kind of reactions that are that easy to read.  But in her own way, seeing him meant a huge amount to her.  I wonder if she often dwells on where exactly he is.  She's seen his room at college, we've talked to her about where he is a lot, but I think still she doesn't get it.  He suddenly went from being here to not being here, and seeing him again must be a huge relief to her.  It teaches me another of those lessons I need to be reminded of over and over---we have no idea what is really worrying her or upsetting her.

Janey's mind doesn't yield easily to analysis.  The clues to her thoughts, her worries, her wants and needs---they are subtle.  But when I work on understanding her, I do think it's true that there is so much more there than it would seem at first glance.  It's going to be my life's task to try to understand her.