Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!

The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.

The start of the next part

Since I last wrote, a big change took place in our lives.  Tony retired from work, 30 years to the day after starting federal employment.  He is 56, so this is a fairly early retirement.  Having him retire early was a huge decision, mostly for financial reasons, but it was the right decision, I am quite certain.

On the day Tony retired, a thought kept running through my head---"The hardest part is over now".  That's where the title of this post comes from.  Of course, I knocked on wood, and of course I know that there are still going to be many tough parts of life.  But from now on, there are two of us to care for Janey.

The smile of a man 5 minutes into retirement!

About a week after Tony retired, I looked at him and realized he truly looked about 10 years younger than he had for the past few years.  Mothers get all the glory and sympathy often in this special needs parenting game, but it's hard to overstate all Tony has done over the years.  Especially the past few years, he was working a job that was extremely stressful.  He woke very early every morning, helped me get Janey off to school, went to work all day, came home, took over with Janey usually, took her for car rides and made her supper, then had to go to bed when she did so he could get up and do it all over again.  He often went days without any time to himself, save maybe his time on the train.  He did all this while dealing with a serious health condition (severe type 2 diabetes---he's been insulin dependent for many years).  Tony's brother lives upstairs from us and is increasingly disabled from the complications of diabetes also, and Tony helps him a lot too.  When Janey didn't sleep, often Tony didn't sleep, and there were so many days I simply didn't even know how he got through the day.

Financially, retiring this early is not going to be a piece of cake, but that isn't something we find nearly as important as our health and happiness.  As long as we can eat, have health care and have a roof over our heads, the rest is gravy.

I've often thought of how in cartoons, characters run off cliffs, but keep going along just fine until they realize they have gone off the cliff.  That's how a lot of our life the past few years has felt.  Not everything is within the scope of what I write about here, but suffice to say we've been running on fumes a lot of the time.  Despite Janey being our joy, our delight, despite her being far happier than she was during some darker years for her, the demands of special needs parenting are always there.  That is something it can be hard to explain to those who haven't lived the life, and can be seen as a complaint, as something I shouldn't mention because I should only emphasize the joy.  But I want to speak the truth here, and the truth is that it's hard.  It's very hard.  It's very hard having a child that will never, ever care for herself, that needs supervision that realistically only we as parents can safely provide when she is not in school, 24 hour, 7 day a week supervision, and that this will be forever.  I know my dying thought will be of Janey, of her happiness and safety.

And so we start the next part.  The next part has been good, so far.  It's the little things that are the most surprisingly special.  On the 2nd day Tony was home, after Janey went to school, after a long night when she didn't sleep well, we went back to sleep after she got on the bus.  We slept in until 10.  We woke up astonished.  It was the first time ever we have slept in together.  Ever.  Last night, we stayed up to see our beloved Red Sox win the World Series.  We didn't have to think for one minute that we should be getting to sleep.  We knew we could rest a bit today.  Those kind of moments are worth the change in income.  They are the kind of special small things I think our new life will include a lot of. 

And most importantly than anything, it's wonderful to see the joy having Tony home gives Janey.  Afternoons when she got off the bus were always a very tough time.  Now, Daddy greets her, and right away cooks her whatever she wants to eat.  Together, they blissfully eat things I wouldn't touch---fried eggplant, steamed greens, tuna salad---and Janey dances around with happiness. 

Here's to you, Tony.  We made it to the next part.

"But there are no services for my typical kid!"

When I write about the lack of help, especially respite, for Janey, an argument pops up a lot.  It's not so much one that anyone has the guts to SAY to me, but one I know people, people outside our autism tribe, might be thinking.  It goes like this "Why should you get help with your daughter?  I have a kid without any special needs, and nobody is helping ME!"

When I hear this, I laugh.  A deep, ironic, non-funny laugh.  Because of course the typical child gets help, and of course the typical parent gets respite.

Let's start right in my own neighborhood, in fact, within walking distance of my house.  I live in a working-class part of Boston.  Not a fancy suburb, just a regular type place.  And if Janey had no special needs, here's the respite I could get at low or no costs...

A community center that holds camps during all vacations, for very low prices

A YMCA with camps, Saturday programs and all kinds of activities

A small theater with vacation and summer programs

A summer program to learn tennis

Summer programs at several nearby school, with academics and field trips

Dance classes, with camps

These are just the ones I can think out without a bit of research.  During a typical vacation, I could choose from lots and lots of places I could walk, and could afford.  I could drop Janey off there and have a whole day to myself, while she had fun with other kids.  And if you think these programs aren't subsidized, think again.  They are heavily subsidized by the city, or by the Boston schools, or by donors.  They are available to anyone.  Anyone but someone like Janey.

Now, if we open it up to the city at large, there's hundreds, probably thousands, more possibilities.  There's the Saturday program I've so often mentioned, for "special needs" kids.  Not Janey, because they have to be able to handle a 4 to 1 ratio.  There are music programs run by the school district, absolutely free summer programs, all day camps.  There are a huge number of programs at community centers.  There are nature camps run by the Audubon Society.  There are so many choices, choices I could actually afford, that I would have a hard time picking.

And what is there for Janey?  There is nothing.  She gets summer school, the incredibly shrinking summer school, which becomes less weeks and less days a week each year.  She goes to regular school.  That is it.

It is an ironic, sad thing that the families most desperately in need of some respite are the same families for which there is none.  So don't say for a millisecond that your typical kid doesn't get services, doesn't get help.  They do.  We live in a society, despite anything anyone might want to think, where Janey is excluded from so very much by her disability.

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.

Visiting Janey

Bradley Hospital, where Janey is being held, is in Providence.  In ideal conditions, it could be a 50 minute drive from our house.  However, anyone who has ever driven in or around Boston knows that those ideal conditions exist only at the rarest of times.  In some ways, the drive to get to Janey seems like a metaphor for so much of the last few weeks---frustrating, exhausting, yet crucially important.

I'll give yesterday as an example.  Tony went in to work extremely early, so he could leave at 2 and we could get an early jump on going to see Janey.  We left the house right around 3.  When we got to where we get on the highway (about 10 minutes from our house), we could see it was almost completely gridlocked.  There is s storm predicted for today, and Boston is full of college students and others who want to go elsewhere for Thanksgiving.  So Tony made a change and got on some local routes.  We used our GPS, which seemed intent on giving us a tour of southeastern Massachusetts.  After a long time, we made our way back onto the highway, and proceeded to creep toward Providence, at 10 miles an hour.

Finally, we got past an area where bridge work was being done, and we were able to make some time.  Regardless, the drive to Bradley took two and a half hours.

We had agreed a few days ago to be part of a major study of autism while Janey was at the hospital.  I spent a big part of yesterday filling out about 10 long forms about Janey's behavior.  We had agreed to have blood drawn last night.  By the time we got there, the woman we were going to meet with was gone, but a head of the study and the blood-drawer had stayed late to get the blood.  We explained the traffic, and I hope they understood, although Boston traffic seems to be something very Boston, which although Providence is quite close, they seem somewhat mystified by.

After having the blood drawn, we had to go back to the waiting room to wait to see Janey.  We were told she was a bit upset and we'd have to wait a minute or two.  When they came for us, they said she had been taking off her clothes again, and asking to go to sleep, as she often does at home, far too early.  They calmed her down and she was waiting for us in her room.

The visit on Monday was great---Janey was calm and happy.  Last night, she was less content.  It was nothing like the scenes at Children's, but she bit herself a few times and at one point half-heartedly pulled my hair.  She also did the repeated asking for things "Want chicken nuggets?  Want to take a walk?  Want water?"  We finally resorted to singing---we sang her a mixed medley of her favorite Beatles and Black Sabbath songs, Black Sabbath being my older son's favorite group.  We modified words as necessary!

After about 40 minutes, though, Janey wanted more action.  We aren't allowed to visit with her outside her room, and she wanted to get out.  So we said goodbye.

Before we went home, we needed to drive to Waltham and pick up William at college, so he could come home for Thanksgiving.  We were thrilled to be getting him home, but tired beyond belief.  The traffic was okay on the way back, but not perfect.  We took local routes home, and finally got home about 9:30.

When I got in and checked the mail, there was a badly photocopied 5 page letter from something called something like Value Health in Rhode Island.  It said they had authorized a 5 day stay for Janey at Bradley, and that any longer of a stay would have to be arranged by the hospital.  I am assuming that has been done, as today would be day 6, but I am not sure at all.  In my hazy state, the form was hard to understand.  We have Blue Cross, so I am unsure why some other agency is the one to decide on Janey's stay.  There was no number on the letter.  Instead, there was a form for JANEY to fill out to authorize me to get information on her behalf.  I need to read the form more today, but a quick look last night said this had to be done even if the patient was a minor.  I need to make calls and try to figure out what is up with all of that, but I have a feeling the day before Thanksgiving is not a good day to reach the right people.  I also know my mind is not in a great place for figuring out complicated letters and forms.  I assume the hospital would let us know if the funding for her stay had ended, but I have nightmares of multi-thousand dollar bills arriving.

And that is where we are.  Janey is calmer, but far from all the way back to what I am learning is called "baseline".  We are tired and stressed almost beyond functioning, worried about Janey and money and what comes next.  Today the weather will keep us from visiting, it seems, and although the drive is a nightmare, it kills me to think of a day without seeing Janey.  Nothing feels settled, nothing feels calm.  And I wonder if it ever will again.

Fictional Moments in Autism Parenting

Before I became a real, live parent of an autistic child, I used to read a lot of books about children with autism.  They formed kind of a sub-genre of parenting books, and I found them compelling.  It's a lot harder to read them now, although I sometimes try.  What makes it hard is that those books all seem to contain some elements that are sorely lacking in my life.  Here's a few of those moments (of course overstated and with fictional therapies, but indulge me!)

The Doctor Denial Moment

"Although little Florence was slipping every day more deeply into the abyss of autism, when we took her to our trusted pediatrician, he patted her on the head and said 'She is just fine!  Every child develops at their own rate!  You are over-anxious parents!'  It took thirty-one more visits to doctors, specialists and finally calling in some favors for her to be seen by the world's most celebrated autism guru for her to finally be diagnosed"

Janey's autism, when it hit, was apparent to strangers on the street.  No-one ever called me an over-anxious parent, although I would have loved to be called such.  She was diagnosed as soon as we asked for her to be evaluated.  There was no question.

The Immediately Choosing a Therapy and Having the Money to Pay For It Moment

"As soon as Florence was diagnosed, we did some research and decided the Colpepper-Smythe Regiment was the therapy that would be her savior.  Although it cost two million dollars a year, and required flying in therapists every week from Albania, and completely remodeling our house, we had faith it was all worth it.  I must admit it was a little bit of a financial stretch.  We had to forego our yearly upgrade to the latest diamond-studded car, but that is how much we cared"

When Janey was diagnosed, we let the school she was already attending know, asked for an IEP meeting, and when it was held, agreed to the very reasonable course of therapy they recommended.  We didn't seek outside therapy, because all of us were selfish and enjoyed eating too much to absorb the financial stretch of giving up food that outside therapy would have required.

The Breakthrough Moment

"After two years of around the clock therapy, without the slightest sign of progress, suddenly there came an amazing moment.  Florence looked at us, said with a smile 'I'm all done being autistic now!', read 'War and Peace' aloud to us and went to the computer and applied for extremely early entry to Harvard, all at the age of four.  It was then that we knew our faith and devotion had been rewarded"

Janey has yet to have a breakthrough moment.  She has lots of amazing little moments, and we love them, but none of them have "cured" her.  In fact, in many ways, she's very similar to how she was at age three, when first diagnosed.

The Passing for Normal Moment

"We decided to put off Harvard for a few years, to give little Florence a chance to enjoy a normal childhood.  We enrolled her in the local pricey fancy private school for completely normal kids, and we knew it was working when her teacher, who we had never told the sordid secret of Florence's early brush with autism,  called us and said 'Of all the normal kids in Florence's class, she's the most normal of all.  I'm saying this to you for no reason in particular, but she would never be mistaken for a child with autism, not THAT super normal girl' "

Janey is not going to have a moment like that.  I am not selling her short to say that.  I no longer preface remarks like that with saying "short of a miracle".  Janey is autistic.  She is going to stay autistic.  That is the reality of her life and our life, and I am gradually starting to feel that hoping someday she will be "cured", she will be "normal" is like hoping some day she will no longer be Janey, and Janey is here to stay, and I love her.

Inclusion vs. separate classrooms---some musing and some ranting

Here's an article I just read about autism and the debate over inclusion vs. substantially separate classroomes...  here----.  The article doesn't come to much of a conclusion, but it prompted me to write about some of my own thoughts on the subject, and to rant a bit over something that angered me!

As you probably know, recently Janey left the full inclusion school she had been a student at since the age of 3, and she now is in a program and classroom for autistic children.  Overall, the transition itself went well   Everyone involved did their best to make it as smooth as possible, and Janey seems to be doing well, or at least as well as before, in the new classroom.  It's too early by far to draw any conclusions about which method of education is better for her.  Deciding that will take at least a year, I think.  But I have a lot of positive feelings about her program now.  I like it that she is being taught life skills, that she has music and art and swimming and gym every week---areas where she can shine in a lot of ways.  I like the structured teaching, and most all reports I get are that Janey is doing pretty well. I hear many wonderful things about her teacher and aides. It's not perfect --she still has meltdowns and tantrums, and at home, we are seeing some tough behaviors, as I wrote about yesterday.  But so far, looking at strictly how she is doing and being treated, I'm cautiously optimistic.

Now the anger.  I didn't let myself write about this last Friday, because I was too mad.  I took some time to calm down, but I am still upset.  I knew going into the new school that the very long school day (right now, Janey is gone from the house from 7-5) was just for this year, that the school had a grant to allow them to offer an extended day for this year only.  I was told there would be after-school offered next year I could sign Janey up for.  Janey went to after-school every day at her old inclusion school, a program I loved.  On Friday, I got the official letter (a form letter) saying that the long day was ending and giving the details of the after-school.

The after-school sounded good.  It included things like computers, swimming, yoga, sports and drumming.  I saw as I first read that it cost $30 a week, which sounded reasonable.  But more careful reading led to this line "We have social inclusion activities available for ASD (autism spectrum disorder) students who are ready and confirmed by ASD Strand Coordinators"  Translation---this afterschool program is open to kids who are "ready for inclusion"  Well, obviously Janey is not ready for inclusion.  If she was, I would have left her at the wonderful school she used to be at.  So she can't go to afterschool?  Not so fast!  There is indeed a separate program for the autism class, focusing on "social skills, life skills and homework" and it's available for "only $150.00 a week"

So---afterschool for regular kids and for those deemed to "inclusion-ready" (a term that makes me sick) costs $30.  Afterschool for autistic kids, AT THE SAME SCHOOL, costs $150.

I'll jump in with what I know might be the response here.  I know autistic kids would require a higher level of staffing.  I know that would cost more.  I understand that.  However, more than FOUR TIMES the cost?  For a program that is about 13 hours a week?  A program that isn't even the same as what is offered the other kids?  Really?

Is this legal?  I am not sure.  Probably.  Is it right?  No.  Kids with autism need MORE help, more school time, more teaching.  Families with autistic kids, let's be frank, need MORE respite.  And although I don't have figures to back this, I am quite sure most families with an autistic child have LESS money than other families.   The needs of autistic children limit a family's ability to make money.

One of the thoughts I used to try to calm myself down about this was that I am not sure I would have sent Janey to the afterschool anyway.  There is no transportation for it, and I've quickly gotten used  to the bus. Even $30 a week would have been a stretch some weeks.  However, in a lot of ways, that isn't even the point.  Janey isn't the only child affected here.  And the issue is fairness, not my personal convenience.

I'm sure everyone involved with this is doing the best they can.  They aren't using autistic kids to make money.  But what kid of a society doesn't have funds available to prevent this?  Where does all the money raised for autism go?  Isn't this exactly the kind of case where one of the many autism foundations out there could help?

And I keep thinking---this would not have happened at Janey's old school, the Henderson Inclusion school.  It would have been beyond comprehension there to change more for kids with disabilities.  If I wanted Janey to go to any program at that school, she was able to---no questions asked.  Ever.  And that is the spirit of inclusion.  That is what I miss---the belief that Janey deserved to be fully included.  But as I told this to a friend, she said---"Yeah.  Until they couldn't do it any more"  I jumped to their defense, but she does kind of have a point.  Inclusion doesn't always work.  I wish it did.  But until it does, can we at least never send home letters that make it quite as clear as the one I got how very separate Janey and the other autistic kids are?

Some late breaking news from later this same day...

-Janey came home today with a new flyer from the principal saying that "several documents were sent out that incorrectly communicated our school's design and cost structure for next year", and saying they would share updated and corrected information about next year's after school program in the next few days, and saying that in the meantime, they wanted to be clear that the program would be equally accessible to all students and families with the same pricing structures for each. Hurrah! I think I was not the only one upset over this!

Stress Times Ten

Just a brief entry here.  The past few weeks have been stressful.  Tony, my husband, is a federal employee, and therefore has been not working for the past two weeks, with no end in sight.  I don't generally let money issues stress me, but just having our routine changed and the uncertainty is stress enough, and the lack of pay is not fun.  We had two appointments last week regarding Janey.  I'll write more about them when I can, but they both upset me in different ways.  Janey had an off and on tough week.  This weekend, however, has been great with her, but unfortunately not with her brother William.  William called on Saturday and said he was homesick and wanted to come home for a while from college.  We went to get him, and it was apparent after a short time home that his anxiety level was unbelievably high.  He's having a very tough time adjusting to campus life.  He's made a good amount of friends, but Brandeis is a very different environment that he's been used to in his urban high school or at home with a loud Italian family.  I went back to campus with him yesterday and spent some time, and even I felt like fleeing from the quietness and the intense and focused social interactions.  William is committed to staying in college, and we are going to support him all we can.  But I have a feeling it's going to be a rough ride.  He worked so so hard to get into a very good school, and it's breaking my heart he is feeling so sad and overwhelmed.

And so we go on.  As with all of you out there on this journey of special needs parenting, or indeed parenting at all, we put one foot in front of the other each day and go on, because that's what we have to do.  We go on with hope that tomorrow will be easier, that our children will be happy and thriving and living the best lives they can.  My religion has left me, for the most part, but there are no atheists in foxholes, and I prayed a bit this weekend, to whoever might be listening, to keep my kids safe and happy.  I truly can ask no more in life but that.

Some reading

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

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

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

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

Three hardest things, three best things

I got this idea from another person's post I read recently---what are the three hardest things and the three best things in my life?

The three hardest---well, number one would be autism. I hate autism. Autism is not Janey, any more than diabetes is Tony or thyroid disease is me. Autism for whatever reason hit my little girl hard, and won't let go. I hate it.

Number two would be not having the funds to do everything I'd like to do for Janey. I don't crave money for myself much, I can honestly say. I'm not someone who wants or needs what money can buy much---I've often thought if I had money for a mansion, within days it would be run down and messy and I would like it no better than my house now. But when I can't do something for Janey because I can't afford it, or worry about the co-pays, or just know it will stretch the budget to breaking point, that is hard.

Number three---tiredness. How I'm always, always tired---partly a result of Janey so often waking in the night, partly because I'm on edge so often, partly due to a thyroid that doesn't work much at all, some because I have insomnia often, partly because I'm overwhelmed. If I had more energy, I could do a lot better for my family.

And the three best things? Those are easier than the worst things!

First, my family. My husband, who is 100% totally a family man, my sons, who are two of the most amazing kids in the world and my beautiful, fascinating daughter.

Second---life's little pleasures. They don't get enough credit. That first cup of coffee in the morning, the word games on Facebook, a comfy bed when I'm tired, the first feel of fall in the air, good television, of course and hugely books and reading, a great lawn sales, a long talk with a good friend on the phone---lots more. At this point in my life I'm not going to be having a lot of life's BIG pleasures---fancy vacations, brand new cars, elegant meals out---but I've got more than my share of the little ones.

Third---the luck of living in this place and time. I know how lucky I am compared to so many people in this world, and so many time periods in history. Even 50 years ago, Janey would probably not be able to go to school at all, instead of going to the amazing school she does. Heck, 100 years ago that wouldn't be a problem, as I would be long dead from my first pregnancy, Tony would be dead from diabetes, Freddy would have died from the terrible asthma attack two years ago---we'd be a whole section in the cemetary. I try hard to keep in mind that chance of time and place have made me very, very lucky.

And now to try to sleep!

Wasted money, discouraged

I did a lot of research the last few days, trying to get ideas about good toys for autistic kids. Janey has very few toys that engage her, and I would love to find some. I read a few places how some kids like the Vtech V-Motion. She's interested in video games, at least in trying to get in on ones the boys are playing, although she can't figure them out. I thought it was worth a try, so bought her one and one game (Wonder Pets). The console wasn't that much---$40, but the game was another $15. She had less than zero interest. She didn't get how the motion sensor worked at all. You can set it to use the joystick, which I tried, but she wasn't into it much that way either. Part of it I think is the horrible graphics. I don't know why that kind of system is about 20 years behind "real" systems. And part of it is just that all of a sudden the game demands you do something like figure out what letter or shape to use, and she can't do that. I wish there was a game JUST FOR HAVING FUN for her age---one with decent graphics, where she could move a controller to drive a car around, or explore. I think she's be able to figure it out. Oh, well. I also got her a big mushy ball with pocky rubber spikes, and she likes that, and I got a bunch of Mister Potato Head stuff, which engaged her for about 15 minutes (with me right there of course, egging her on). And there went most all of the money I managed to make working all week on ebay. I wish I had more money. Don't we all. It just seems so unfair sometimes thinking there is ANYTHING out there that could help Janey that I just can't afford. I know that is life, but sometimes I wish life wasn't like that. I would love to get her an iPad. I think she'd be able to figure that out easily, with the touch screen. I'd like to get her a whole huge amount of sensory type toys, fill a whole room with them (if I had an extra room). I'd like to find the perfect camp for when she's a little older. I'd like to be able to even afford after-school at her school. I'd like to be able to get her extra nice clothes. I wish I could afford a babysitter, but with that wish I also would have to wish I KNEW someone would would babysit her for pay. As you can see, this is a dreaming session. I just felt so fed up today with how I chose to spend the little money I had on something that seems like a waste now. It might work for her someday. And it's just money. I'm just indulging myself in self-pity here. Hopefully anyone reading has given up on this post by now, so they don't have to hear all this! But if you didn't, I should say Janey was quite sweet today, good at the ToysRUs, cheery even if she didn't want to play anything, looking precious. So I can't blame her for my rotten mood!

Sign Language and some complaining

We've been trying a little to teach Janey some signs. I resisted it for years, because I think I felt since she COULD talk verbally, that is all we should encourage. But the verbal talking is not making a huge amount of progress, and she was signing "more" all the time after learning it at school. I found a good web site that shows little videos of each sign. I think it's something a lot of people know, so it should be easier to co-ordinate with school than some things. We'll see how it goes.

I'm very happy to have met another woman with an autistic daughter through this blog---thanks, Michelle! It's so wonderful to talk to someone else that has been through a lot of this!

I'm also happy that Janey is starting music therapy at school. It took a long time to get it started, but I really like the therapist and I think it will be helpful.

To be less positive for a minute, I've been thinking about how much more parents with tough kids like Janey need support and breaks and time off, and how much harder it is to get that than it would be for parents of "normal" kids. It's an example of something that should be MORE available being actually LESS available. If Janey were mainstream, I could easily find a day camp, swimming lessons, dance lessons, music lessons, day care, etc. Paying for them might be an issue, but FINDING them wouldn't be. But as things are, it's so very hard to find such classes or care, and if I do find them, they cost much more than they otherwise would. I don't think people sometimes realize how hard just a regular day is with Janey. Imagine taking care of a child that does the kind of things an 18 month old would do, so you have to constantly watch them, but they have the physical abilities of a 5 year old, so it's even more dangerous. Then imagine you have no reliable way to talk to them, and that they are prone to suddenly have a tantrum or start crying at any moment, and you have no idea why most of the time. Then imagine that that is your life, all the time, and there is almost never a minute off. And imagine you love that child more than anything on earth, and want the best for them, but half the time you are too darn worn out to do all you think you should for them. And imagine you have 2 other children, and a house to take care of, and bills to pay. That's my life. And I like my life, most of the time, but I just wish I could get a break once in a while. And I am luckier than most, with a very supportive husband and good friends. Okay, enough complaining.

Depression

I think maybe I am really getting depressed. It's probably lack of sleep, and just the daily grind which isn't just Janey, but many things. I am crying at the drop of a hat and just feel completely overwhelmed. I found this link which explains part of what I am feeling.

http://autism.about.com/b/2007/04/30/depression-in-mothers-of-children-with-autism-whats-your-take.htm

and has a lot of other mothers talking. If it were just Janey I think I could handle it, but it's also money issues, dealing with Freddy who isn't happy lately and can be very tough at times, making sure William gets the time he needs, worrying about the house, even worry about Schemer the cat who is not doing well. I really don't think most people know how hard life is feeling for me. I don't like to say how hard it is, that is probably why. I believe in being cheerful and making the best of things. I don't even know what would help at this point. Nothing would help, I don't think. No-one can watch Janey, no-one feels up to it and I don't blame them---it's too hard even for a whole school to watch her sometimes. Tony is at work so much of the time. I don't like to give in to self-pity this way. But this is my place to write, I guess, if others read it it's because they want to, so I will try not to feel guilty about even expressing my depression here. There is no-one to talk to who understands. People can say "Oh, I know how hard it is for you, I wish I could help" but none of them really can help. People have their own lives. Seeing a therapist is not going to help, unless they plan on coming here and giving me a break now and then, and on giving me some money to get us out of debt. Bills yesterday and a new $300 worth of medical bills just for Freddy's last illness, plus a hit of $70 at the pharmacy yesterday for his drugs. I think a lot of people would be stressed just by Freddy's asthma, and that doesn't even merit much thought, except to make sure he's okay each day. Just one extra thing.

Oh, well, have to get Janey to school.

Bad days

The last few days have been really awful with Janey. I am having a very hard time staying positive. It's been vacation week, so her routine is off, and we didn't have a lot planned---the boys really like to do nothing and relax during vacation which I can understand, as they work hard at school. Tony was home the first 3 weekdays, but again, we didn't do much, not even with him home, he needs to relax too and he was doing just that. Janey started having real fits, I mean worse than ever, and it's always been bad when she has a fit. But these were like 2-4 hour fits, just banging her feet and screaming and tensing all up and crying without stopping. Last night was the very worst, she screamed from 8pm until at least midnight. I think some of it was gas pains as she kept wanting her diaper changed. But a lot of it was just being upset about being upset. She repeats phrases like "It's not dark in here" which I have no idea what she means. I see no light at the end of the tunnel. I am tired all the time, so tired I could collapse. I am getting nothing done, I've practically given up on ebay and Amazon and things, I just don't have the energy. And we got a letter a few days ago saying basically the state is no longer going to offer any autism services, they have no money for it. So the little thing we were getting, free after school, might end in June, and the swimming. And no hope of any respite money ever, not that we were getting any. I think people like to think if you just look, there is all this help out there. That isn't true. Most of the money and foundations and things you hear about for autism are for research or for very focused things, and not for really helping everyday schmucks like us. I dread the summer. I dread most everything the future holds, I feel like. I have no help at all, and Janey has again today cried a huge part of the day. I try so hard to be cheery and nice and upbeat. I bought her some Fisher Price toys today, I had to make myself get out with her and we went to ToysRUs. I opened them a bit ago and of course they made her scream and cry. She might like them some day but for now it just feels like I threw the little money I have into the trash.

Just had to vent here where no-one really sees it much I don't think.