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

The Very Bad Night

Trying to keep Janey happy 

Janey's great mood came to an end this weekend, a crashing, discouraging end.  When she got off the bus on Friday, I could tell she wasn't doing well, and within a few minutes, she was biting her arm and crying.  By Friday night, she was in a full-blown bad mood.  All day Saturday and Sunday, she cried, screamed, bit herself, asked frantically for one thing or another and then quickly changed her mind and asked for something else, just plain was severely unhappy.  We kept up our weekend routines, the ones she usually loves.  The big thing we do is take her for lots of car rides with music, and we did that.  We've taken to choosing one town to take a big drive to each weekend for the long ride of the weekend, and we went to Duxbury, a coastal town, on Sunday.  It was lovely, but Janey was very unhappy.  On the way back, she kept falling asleep---a very unusual thing for her to do, but she didn't seem sick.

Sunday night into Monday morning will go down in our personal family history as The Very Bad Night.  Janey woke about 1 am, after going to sleep about 8 pm.  She woke in a hideously bad mood. She was screaming and crying endlessly, and keeping up a long line of requests that immediately were cancelled out by new requests----"I want Angelina Ballerina!  I want Kipper!  I want Cat in the Hat Knows a Lot About That!  I want cheese!  I want salsa!  I want soup!"  Now, when we are awake and rational, we know that none of these requests are real, that she is just showing in the way she can that she wants something to make her feel better, and she doesn't know what that is.  But in the middle of the night, we are in a different state.  That is the part I think it's hardest for those who don't have full time care of a child with autism to understand.  Even those who work with kids like Janey, who are wonderful at understanding them and caring about them, don't quite get what it's like when you have slept almost not at all and you are trying to deal with your child and keep her happy and get some sleep.  You aren't thinking straight.  We kept trying to do what Janey wanted, hoping against hope she'd relax and sleep, and of course she didn't.

By about four in the morning, we had entered a state that is hard to even describe.  Tony had been off and on a little sick all week, and he was tired beyond belief.  I kept encouraging him to go into another room and sleep, but he could see I wasn't up to the sole parenting task, and he was probably right.  We both were just tired beyond words.  And Janey kept screaming.  We sat there together, Tony and I, and just were in despair.  We had that feeling that only comes during the night, the feeling that we just couldn't see how it would be possible to keep living this life, but knowing we had no choice.  You don't think, at times like that, that it's ever going to get better.  You don't even fully think the morning is ever going to arrive.

The morning did arrive, and by that time, by the time Janey got on the bus, she had somehow cheered up. Tony stayed home and caught up on sleep, and finally hopefully kicked off his illness. Janey got off the bus in quite a good mood.  The mood lasted all afternoon and evening, and she woke up this morning as chipper as could be.

We know the good mood could go away again at any time, but it is surprising to see it replace the bad mood at all as quickly as it did. Janey's moods usually last at least a week.  We are trying not to get too hopeful, because it's too hard to then lose that hope.  That was part of what was happening on the Very Bad Night---we had come off a few weeks of a happy Janey, and it was so incredibly tough seeing her at her worst again.

It's during those awful nights I most think of the rest of you living this life.  We are very alone, at those times, but I know we aren't totally alone.  All over the world, there are other parents awake, dealing as best as they can with their kids like Janey.  There are other parents living the life we live, the life that is at times incredibly, heartbreakingly tough, tough for the kids and tough for the parents. Next time you out there have a Very Bad Night, next time we have a Very Bad Night, we can send a thought to each other, a wish to make it to the morning, a reminder that nights, no matter how awful, do come to an end, and the morning starts a new day.

Janey's Halloween

Growing up, I'd say Halloween was my favorite holiday.  I vividly remember counting the days until it arrived each year, as most people count down to Christmas or their birthday.  I loved it for the candy, of course, but also because it felt like a day that usual life took a turn.  You could go to people's houses, knock on their doors, and they would give you candy.  Since we lived in the country, my father drove us around town, and our haul was limited a bit by that, so I used to daydream about when I would have kids, and we'd live in an area with LOTS of houses, and they could trick-or-treat the night away and come home with HUGE bags of candy.  That did happen, for a few years with the boys.  But kids grow up and either don't go out any more, or go with friends instead of parents.

Janey never really warmed up to Halloween in past years.  She didn't much like dressing up, and she wasn't terribly motivated by candy.  I didn't push it.  I wished she would be interested, but she wasn't.  Last year, Halloween came right before the very worst time ever, when she was really breaking down.  We went to one house only, our next door neighbors, and she was done.  A few others years, we didn't even try trick-or-treating.

This year, I signed Janey up for a Halloween party put on the autism support organization for our area, for the 30th.  We went last weekend to get a costume.  I let Janey pick what she wanted, and she pointed to a shimmery long cape, overpriced, but I got it anyway.  I didn't get any hats or masks or other accessories, because a cape is about all I figured she'd tolerate wearing.

We went to the party last night.  It was not a hit, but not a disaster, either.  We stayed about 10 minutes.  The room was hopping with kids and adults.  We got there about half an hour after it started, which I thought would be good, as I knew Janey wouldn't want to stay the whole time (2 hours) but that might have been a mistake, as things were so crowded once we got there.  It was set up to have volunteers take the kids while the parents sat at the edges of the room.  I liked that idea, but I knew in practice it might not work with Janey, and it didn't.  The room was set up in activity stations, with the idea that each child would do an activity and then get candy at each one.  The first activity was decorating a treat bag, with coloring and writing a name and stickers.  Janey can write her name, sort of, under ideal circumstances, but not with a stranger in a noisy crowded room, and she doesn't color.  So they lost her quickly, and she ran over to us and said "want to go for a car ride?"  We tried to get her to stay a little longer, but it was obvious she was done.  In keeping with our new philosophies, we left, although I have to admit I was disappointed.  It is hard when she doesn't tolerate things that are specifically for kids with autism, and I'm always surprised how many kids with autism seem to be having a great time at them.  I love it that parties like this one are available, and I'm glad we went even for a little while, but still...it's hard sometimes when even in the world of autism, Janey stands out.

After the party, I wasn't hopeful for trick-or-treating, but I really wanted to give it a try.  First, I took Janey to our next door neighbor's house, the one house we did visit last year.  Janey has had the urge to trick-or-treat there almost every day since, and it's hard to convince her that it's a once a year thing!  So she was very happy to go back there!  They are so sweet and kind to Janey.  We are lucky with our neighbors on both sides.  Then, we went over to my friend Maryellen's house a few miles away.  I figured at least Janey would be able to trick or treat there.  Once we were there, I decided to try taking her to a few houses around their neighborhood.

And that was...wonderful!  I am still almost in tears over how well it went.  Janey was excited!  She marched eagerly along, going from house to house, taking a piece of candy, sometimes saying "trick or treat" and sometimes saying "thank you!" but always smiling and flapping with excitement and singing to herself.  Everyone noticed how happy she was, and we got absolutely nothing but positive looks and comments.  It was like a dream.  These weren't people I knew---they were Maryellen's neighbors, not mine, and they hadn't met Janey before, but they were to a person kind and sweet to her.  We went around for about 20 minutes, picking up lots of candy, and stopped while Janey was still very happy.

I think as Janey gets older, in some ways, people accept her more.  I didn't say to anyone that Janey was autistic, but I think everyone knew.  She is almost as tall as I am, she looks older than her actual age, but I held her hand all the time, and spoke for her when she didn't speak.  And when Janey is happy, there is something about her that draws people to her.  I might just be saying that because she is my daughter, but others have told me the same thing.  She is so blissfully happy, so purely happy, that others are happy being around her.

This has turned into one of my longer blog entries in a while!  I'll stop for now, and just say Happy Halloween to everyone.  And say---keep holding out hope.  When I look at how Janey did tonight, I am amazed.  It might never go this well again on Halloween, but I have tonight to remember.

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.

Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.

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.

The Month That Wasn't

It's been a month today since the day that I got the call from Janey's school, the call that they were calling an ambulance to take her to the hospital.  It's been a month that in many ways, I would like to erase from my life.  In other ways, it's been an important month---in some ways, even a good month.  But I think it's fair to say I hope I never have another month like this one.

Here's a little synopsis of the month.  Janey's behavior, which had been escalating for a week or so, got even worse on November 14th.  I rode with her as she went by ambulance to Children's Hospital in Boston.  In the emergency room, she was assessed and it was determined she needed hospitalization in a psych ward for children.  There were no appropriate placements available right way, so we spent 6 days at Children's as boarders, waiting for a placement.  We got one after those 6 days at Bradley Hospital in Providence, and Janey was there for 18 days.  She came home after that, when they felt she was stable enough to leave.

Those are the bare facts, stripped of emotion.  Here's some of the emotion.  The stay at Children's was hell.  I can never think of another word to use for it.  The 28 or so hours in the emergency room were the deepest, darkest levels of hell, and the next 5 days in a room on a kidney transplant ward were regular hell.  Janey wasn't able to leave the room, was periodically attacking the nurses, the sitters who sat in the room and me.  She screamed extremely often, asked frantically for one thing after another we couldn't do, and slept poorly.  I don't think I'd survive another 6 days like those.  The stay at Bradley was in some ways a relief and in other ways not.  The drive to Providence was often very, very tough, both in terms of traffic and in terms of giving us time to think what we were doing---visiting our precious daughter in a locked psych ward.  The visits with her were both wonderful, because we missed her so much, but also awful, because in what was a theme for the month, we were not supposed to leave the room with her, and she would quickly become bored of us and restless.  It would become a situation where either we saw her for far shorter than we wished or we risked setting her off into a spiral of a meltdown.  Having her home, although joyous, led us to see nothing had really changed.  Janey has been often very unhappy the 5 days since she's been home, although there have been good times too.  A few days ago, she attacked my father, in a frightening repeat of what started this whole time.

What has been good?  Well, we got a letter yesterday saying we had been approved for state supplemental insurance for Janey, so going forward, we might be qualified for help with therapy and things like pull-ups.  I need to work on getting that all set up, but it's something we probably should have done years ago.  Janey is off two of the three medications she had been taking, and we are seeing some improvement in her talking, which leads to the upsetting thought that she may have been overmedicated for a while, but in trying to be positive, also means she might be no longer overmedicated.  And the greatest good part--the absolutely overwhelming and incredible support, in so very many ways, from all of you, all my friends who read this blog---those I know in person and those I know through the magic of the internet.  You are a wonderful bunch of people, and you let me live through this.  I mean that with all of my heart.

What are our fears?  We have many fears.  The biggest is that Janey is going back to school tomorrow, if everything goes well.  Her school has been wonderful, and they are eager to have her back, but we truly feel everything might repeat itself.  I have no confidence Janey is going to be able to not repeat the behaviors that started all this.  We have realized places like Bradley are not set up to change the future.  They are set up to deal with children in crisis, during the crisis, and they do a outstanding job with that.  But they are not set up to change the child.  I am not sure it's possible to do that, to be fair to them.  I don't think I'll ever relax again while Janey is at school.  I will always be waiting for another call like that horrible one a month ago, a call saying she is out of control and they think she should be in the hospital.

I will close with right now.  Right now, Janey is happy.  She is having bacon that Daddy is making---bacon made by the best father in the world.  We are looking forward to getting a Christmas tree today.  We are together, our older son William will be home from college soon, and we will celebrate Christmas and look toward 2015 with hope.  And that is enough, for right now.

Little Triumphs of Christmas

Christmas has come and gone, and overall, it was a good one.  I was very tense about Christmas this year, as I guess in some ways I always am, but it seemed like more this year.  However, I used a "fake it until you make it" method (a phrase a friend told me that I very much like) and kept plugging away at Christmas stuff, and when the day came, it all seemed to work.

As you can see from the pictures, Janey actually opened two presents, and looked at what was in them.  That was huge for me.  She wasn't that excited, but she did seem to get the process, and was pleased with her nail polish and her plush Sesame Street count---the presents shown here.

You can see she wasn't too into her stocking, but she did take a few things out of it and looked at them briefly!

I think the best part of Christmas with Janey this year was Christmas Eve.  As we almost always do, we went to the house of a family friend.  The picture above is our traditional picture of our kids and the friends' daughter, in front of the tree.  This year, it was going to be a little bit bigger crowd than usual, and we weren't sure how Janey would do.  She did quite well!  She did something she sometimes does when there's a lot of people---she surveyed the crowd and found someone she liked the looks of, and sat on their lap.  In this case, it was the girlfriend of our friends' son, and the girlfriend's mother, people she had never met before.  They were wonderful with her and pleased she picked them, I think!  She did well with the two year old boy that was there, the grandson of the friends, which I had been nervous about---Janey can sometimes be aggressive with younger and smaller children, but she mostly ignored him, although at one point, while we all held our breath, she briefly put her arm around him.  There was one screaming incident there, when Tony had taken her out of the room to calm her down.  Tony and I both realized that how he and I handled that screaming made a different.  We stayed calm and acted like it wasn't a big deal.  I said something like "This screaming isn't uncommon.  It's fairly normal for Janey" and I carried on as if it wasn't happening, and that seemed to relax everyone about it.  We've realized, over time, that how we as parents react to things Janey does sets the tone.

The Christmas Eve night and Christmas day made me realize that Janey is making progress.  It's slow, but it's there.  In little, small ways, she is becoming more mature, and we are becoming better at being her parents.  Some days it doesn't feel that way at all, and if you were watching us from outside, you might not see it.  But we are learning all the time, and so is she.  As we look to the New Year, we feel hope---hope mixed of course with fear, with some sadness, with challenges and with acceptance of the life we have been given, but with hope nonetheless.

Everything magnified by ten

I'm trying to think of a way to describe Janey's behavior this week, and the title of this post is what I came up with.  She's not doing anything she hasn't before, but everything is done in a bigger way---louder screaming, more violent reactions to being told no, more hysterical laughter, bigger acts of destroying things around the house, more night waking----it's like she just decided to kick it all up a notch.  It's been pretty tough, to put it mildly.

It's hard because this is probably the most unstructured week of our year.  No summer school, regular school doesn't start until September 4th (and believe me, that date is circled in red on my calendar), Tony is at work, we are just hanging out.  And I had planned to try very hard to take Janey places, to keep her occupied, but when she is acting the way she has been, I can't do it alone.  Literally.  I can't handle it alone when she runs away from me, when she decides she wants her clothes off, when she starts screaming and lunging to bite me, when she scratches herself until she draws blood---it's not a one person job.  Even taking her in the back yard is getting tougher, as she suddenly gets unhappy there and freaks out, and does the clothes off routine, which she knows means we have to go inside.  I'm starting to wonder if she's using it as a way to tell me she wants to go inside, instead of just saying that, which she can say easily, but what am I supposed to do if she is?  Let her stay outside without clothes?  No.

Yesterday we did get out, by taking William with us.  He is leaving for college on Sunday, and we are piecing together shopping for that.  Janey did fairly well with him there, but that was by means of him whisking her away the minute she got crazy, for escalator rides or quick walks.  And by means of literally grabbing the first 3 towels I saw to buy William.  We then went to ToysRUs, which she enjoys looking around at.  However, she quickly found a toy she took an immense liking to, a hugely overpriced electronic counting Elmo toy.  It has flashing lights and an annoying song---what else could you want?  She has some birthday money, and I had hoped she'd like something else, but she now knows what the checkout counter is for, and pulled me over to it so we could make the gadget ours.  Time used up---about 10 minutes---leaving many hours left in the day to fill.

I made some calls to try to get something started to help all this.  I got a referral done by my pediatrician to get Janey seen at Boston Medical Center, which I am told has a good autism program.  We have an appointment in October for just Tony and me, to do intake.  I also made a sooner appointment for myself with a new rheumatologist, to try to get some health answers so I am better able to handle things.  Tony is going to call Janey's psychiatrist today, to see if we can adjust her medication.  We are doing what we can, but there is honestly not that much that can be done.  There are times when her behavior is such that one's instinct would be to take her to the emergency room.  If it were something physical wrong with her, and she was showing symptoms of the severity of the ones she is showing, I bet I'd get very quick and wonderful care.  But I've read enough accounts of people in desperation taking their melting down autistic kids to the ER to know it's a waste of time.  Which is, of course, a crying shame.

My theory as to why things have gotten worse, besides the unstructured time---Janey is getting closer to puberty, and I know how that affects any girl.  She is rapidly getting stronger, and bigger, and she is frustrated, I am sure, with her limited speech and independence.  During calmer times this summer, she was showing me in many ways she wants a little more freedom from me---the tiny bits she can have, like sometimes walking without holding hands, like being in a different room---she actually said one day "I want privacy"---a concept I was surprised she understood.  But if I let her even go into the bathroom by herself, she wrecks havoc---towels in the toilet, water overflowed, all the toothpaste squeezed out---even as she is getting better at using the toilet on her own.  How do I figure this out?  What can I do?

I think I'm scared of a point arriving when Janey truly starts hurting me.  That is very hard to say.  But she is more often lunging at me with her mouth open, wanting to bite me.  The other day, angry I didn't change her Netflix show quickly enough, she smashed the remote on my wrist, and I feared for a minute it was broken.  What do I do about this?

Lots of questions here, which are of course mostly rhetorical.  There aren't answers.  All I can do is hope that Janey gets through this phase and back to the one she was in previously, when she was a delight and I felt a lot of hope.  I need that hope.

Warning! No Silver Lining!

If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry.  I'm sure I'll get back to that, but for now, I haven't got that in me.

I wrote optimistically on Friday about trying a new way to deal with Janey's screaming.  I felt enthused, and we saw some early good results from ignoring the screaming.  I woke Saturday determined to work on that method.  However, Janey didn't have the same determination.

We all can ignore screaming.  But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch.  We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground.  Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured.  Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled.  Or turns off the TV or computer someone is trying to watch, over and over and over and over.  Or strips off her clothes literally hundreds of times a day.  That was yesterday.

There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us.  But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.

When Janey is like this, it's not living.  It's surviving.  We are shell-shocked.  We look at each other and just wonder how we will make it to night.  And when we slip and let ourselves think about the future---there doesn't feel like a future.  There is no end in sight, ever.  There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.

I'm not going to put a silver lining here.  I am going to say that it isn't always like this.  If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is.  I have hope that she will cycle back to that.  That is how we do it, when people ask us how we do it.  We hope.