As time goes by...thoughts, concerns and moments of connection

I haven't written as much lately as I used to.  There are a lot of reasons for that, and some of them are beyond the scope of this blog.  But some of it is that Janey is steadier than she used to be.  She is more settled into routines, and mostly happier.  For the most part, that's wonderful.  I would never want to relive some of the past years, especially what I think of as the Hospital Years, or the Changing Schools Years, or the Non-Stop Screaming and Arm-Biting Years.

There are still challenges, to be sure.  One is sleep.  For weeks, Janey fell into a pattern of going to bed around 5 pm.  Nothing anyone could do would keep her up.  When someone is determined to sleep, they sleep.  Of course, the other side was that Janey would wake extremely early---often at 1 or 2 in the morning.  And she would stay awake.  When she's awake, one of us has to be at least sort of awake.  We are at the point now where we can cap-nap in the same room as her, but never fully sleep, as we need to be alert to what she's doing, and she often makes sure we are not fully asleep by suddenly thrusting a TV remote or bottle of soda or stick of cheese in our faces and making demands.  After a few weeks of that, we fall into sort of a half-life.  You never feel fully awake or fully asleep.  Knock on wood, she's back in a better cycle---bed about 7, up about 4:30 or 5, which works with her bus arriving at 6:15.

Another challenge, or concern, is as always Janey's speech.  Her speech is highly cyclical, like everything else about her.  Sometimes she talks much more than others.  But overall, her talking has settled into a fairly low point.  She says only a limited amount of things, and even the things she does say are often said in mumbles, hard to understand, or in a very rushed recitation of a phrase.  She has a great speech therapist right now, and a teacher who seems terrific, but these cycles of speech don't seem very affected or changed by anything external.  Lately, her default answer to almost all questions is something like "That one!"  We ask "What show do you want?"---"That one!"  "What do you want to eat?"  "That one!"  I think she truly thinks we can read her mind.  Or she's mentally using a choice board and pointing to what "that one" is.  Whatever it is, it's frustrating.

There was a presentation at Janey's school today about the various high school choices in Boston.  Janey's in 7th grade, so there's another year before I have to choose, but I want to stay well on top of it and do a lot of school visits.  The presentations varied widely, and I think only actually seeing the programs will answer some of the questions I have.  But I'm clarifying my vision of the kind of program I want.  I want one where the challenges are appropriate, where Janey is accepted as who she is.  I think of a video game analogy.  I don't want a program where the sole goal is leveling up.  Janey isn't going to get a high school diploma.  She isn't going to hold a non-sheltered job.  She isn't going to live on her own, or even be able to be alone at home ever.  I want a program where she can be a success by being who she is, not by others striving to make her what she isn't going to be.

It's interesting how as Janey gets older, I think a lot less about how she is disabled and a lot more about just how she IS.  If she is happy, and she makes life so Tony and I can also be happy, and she is cared for and loved, that is wonderful.  The most wonderful times of all are times of shared happiness with her.  I had a moment like that the other day.  Janey, as I've written about often, loves Christmas music.  This year, she is very taken with "O Holy Night".  Not every version, as she let us know firmly when I played through a lot of versions on Slacker Radio with her, but when she hears a version she loves...wow.  I played such a version the other night, Nat King Cole.  Janey and I lay together on her bed listening to it, and our eyes locked.  The look in her eyes---I can't even think about it without crying.  We were both completely overwhelmed by the song, and we had one of those rare moments of pure connection.  They are the moments I live for.  In some ways, Janey lives in a different world than I do, but at moments like that, we are completely together.  It's hard to explain, but I'd guess others have had such experiences with their children like Janey.

I'm thinking of all of you this Christmas season.  I'm having a hard time this year, troubles and worries that are nothing to do with Janey occupying my mind often.  I wish so often I could spend time in person with so many of you I've met throughout this journey.  What I wouldn't give for a bunch of us to sit down and talk and eat and laugh and cry....  I hope December is a happy month for you all.

Sneakers with a skirt

This morning, I put Janey in a skirt.  As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks.  I was in 7th grade, like Janey, and I had worn a dress to school.  With it, I wore sneakers, Keds kind of sneakers that were floral.  At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt.  I think they look fine, but other people think it looks really dumb"  I hadn't thought of that for many years.  It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.

In many ways, Janey's world and the one I lived at her age don't have many interacting points.  She doesn't live a life which is in any way at all like most 13 year olds in 7th grade.  That makes me sad, often, but I don't think it makes her sad.  The last year or so, most of the time she's seemed pretty happy with her life.  We've fallen into a routine that works for her.  She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep.  That's her days.  On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.

Janey doesn't know you aren't supposed to wear sneakers with a dress.  I guess I didn't either, but she's not going to be schooled in it.  She doesn't care.  She's not going to have many of the small moments of hurt and sadness that the teenage years bring.  She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships.  There is much she's not going to feel, and I have to say---that's not all bad.  When I say I wish she could feel those things, there is part of me that is glad she won't.  Life, typical life, everyday life, has a lot of pain.  

Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism?  Am I supposed to only feel happy when she is able to simulate normal?  Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds?  Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look?  Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult?  Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?

I hope I can.  

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

Janey's end of the spectrum

I don't like the term "low-functioning autism".  I don't like it, but I use it sometimes anyway.  I use it because "autism" has come to encompass such a range that it's very hard to explain to those who haven't met Janey the level of care she needs. 

Janey

I don't like the "low" part of the word.  Janey isn't lower than anyone.  She's as valuable a part of society as anyone else.  She has much to offer the world.  She is an interesting, complex, talented person.  As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age.  We are used to Janey's harder parts. They are still hard sometimes.  When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard.  But she's 13, and she has never once said she hated us.  She's never made a snide comment in her life.  She is excited, thrilled even, by a drive-through trip to McDonalds.  Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.

However, she has care needs that are far beyond what most 13 year olds have.  She cannot be alone, not for a moment.  She is not fully toilet trained.  She can't read, write or most of the time talk in full sentences.  She cannot dress herself completely.  

Janey will never live alone.  I used to modify statements like that with "most likely..." but I don't anymore.  She is not going to live alone.  She will live with us until we are gone.  Then...well, that is part of why I want a term that explains Janey's needs better.  That is one of the  black holes in my thoughts.

The other black hole, one I can barely think about or write about, is the fear of abuse.  It is why I no longer think much about respite.  I trust Janey's school, and I trust my family, and close friends.  But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway.  I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times.  Caring for Janey is a high intensity job.  If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit.  Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.

Someday, Tony and I are not going to be on this earth.  And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either.  And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.

If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are.  There are those who might say I shouldn't speak for Janey.  I can respect that view, but I also respectfully disagree.  Although Janey certainly can communicate, she can't do so in such a way that explains her needs.  I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.

Call it what you want to.  Call it severe autism, or low-functioning autism, or classic autism.  But there is a huge divide between Janey and a child who will someday be capable of living on their own.  They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that.  We need to make society aware that children like Janey exist, and are worthy of the best we can give them.

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.

Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.