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.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

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

Part 8----Healing Slowly

Today, the surgeon said Janey's bowel sounds were NORMAL---a wonderful thing to hear.  It was the first time in two weeks that has been the case.  It was also the first time we heard the work "discharge" in terms of her going home, not with a date attached, but she  said something like "Now we can think about discharge someday!"  We are feeling cautiously optimistic, although the surgeon made sure we understood it's still a long, long road to recovery, and Janey would not be herself for a long, long time.  She  said Janey has had one of the most serious conditions that a child patient can have in a hospital, in terms of length of stay and time to recover.  But we are finally talking recovery, not just crisis after crisis.

Maybe with the getting somewhat better, Janey is acting more unhappy.   When she was so sick she could barely move, she didn't seem as sad as she does now.  I can think of only two  times she has smiled since she's been in the hospital.  She spends a lot of time just saying "Mama!  Daddy!" and making a sad whining sound.  It's hard to hear.  The big challenge is knowing how much of this is pain.  I feel like she's shown us that she has a huge tolerance for pain, and doesn't show  it in normal ways.  So it's up to us to figure that out.  She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly.  We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.

We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent.  We  walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly.  Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms.  It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.

Eating is the other challenge.  Janey is finally on a non-restricted diet.  She  can eat anything she wants.  She is still getting the IV nutrition around the clock, but of course we want to get off that eventually.  We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks  from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her!  Eating is an area where I think a misunderstanding of autism is common.  Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one.  But she isn't.  She likes to eat a very lot, and eats a huge variety of foods.  As we have found to be the case here, everyone listened to what we said.  They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.

My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy.  Seeing her have trouble even walking, or seeing her not enjoy food--it's sad.  Those were her "normal" joys.  I have to admit I've had some moments of thinking this all just isn't fair.  Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons.  Wouldn't one or another be enough?  I try hard not to get discouraged, to feel put-upon, to cry much,  at least until I have a day alone, but at times, I am having a hard time with it all.

The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015.  It was a wonderful ceremony, and I am so proud of my newest high school graduate.  Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him.  It is not how I ever pictured his graduation night being, but life is often not what we pictured.  Watching him get his diploma was one of those moments when life was more than I ever expected.  And Janey is getting better.  She will get better.

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.

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.

When people can't see the delight

Janey had a physical today.  I like my pediatrician a lot.  He has been very good to my family over the years.  He saw each child on the very day they were born, and it was exciting today to have him see William as an adult, ready to go to college---great to have him see how far William has come, and to have him see the fine young man Freddy is too.  But something bothered me a little about the visit.  I couldn't quite put my finger on it at first, but I think I have it now.  I don't think he can see the part of Janey that is a delight.

To be fair, Janey generally screams all through doctor's visits.  She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like.  He doesn't often get to see Janey happy.  But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!"  Tony and I were excited.  And he was kind to her, but he didn't seem charmed.  When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are.  I know he worries about us.  He said as much, and I think I saw tears in his eyes.  He's a very kind person, and he cares for us.  And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey.  She is probably one of the most disabled patients he has.  She is also probably behaviorily one of the most difficult.  There have not been that many moments of triumph with her.  She hasn't made exciting huge jumps.  She is not a classic success story.

But she is so often, in so many ways, a delight.  And many people do see that.  Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be.  Not always, not even mostly, but often.  She can make us happier than almost anyone when she is happy.  She is funny, she is spontaneous, she is often a blast in her own way.  She can make us despair, sure.  Often she does.  But sometimes she makes us laugh until we cry too.  After the appointment today, we went to get some food.  Tony took her to Burger King, and I went with the boys to a burrito place.  She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!"  We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture.  She knew we found her funny, and she was playing it for laughs.  Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.

I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy.  And it partly is.  She has made our lives often very, very, very tough.  She is not happy much of the time.  She will almost certainly never live on her own, never hold a job, never be able to be unsupervised.  She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully.  But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that.  I know not every can, or will.  To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own.  But I've learned that a child like Janey is not a tragedy.  She is a person, a child, my child I love.

Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself.  The smile in the picture says what I want to say more than my words do.

Too Healthy?

A few days ago, I got a call from Janey's school nurse.  Janey has a red area on her face, which I had been assuming was dry irritated skin, but the nurse (who is fantastic) thought it might be strep.  She said a lot of kids in Janey's class had recently had strep which first presented itself as a red face race.  So Tony got Janey early from school and took her to the pediatrician's office.  They did a rapid strep test, which I wasn't too surprised was negative, and they said that they did think it was just dry skin.  I wasn't surprised not because I doubted the nurse, but because Janey almost never gets sick.

When Janey was younger, she did get sick now and then, but not as much as most kids do.  She has some fevers that would come and go, and she occasionally had colds, but never the illnesses her brother had, like croup or pneumonia or roseola.  Starting about three years ago, she started to basically never get sick beyond a very mild cold.  Sometimes, half her class would have whatever was going around, but Janey stayed steadfastly healthy.  She's had only one ear infection ever, and last year she missed only one day of school, for a non-illness reason.  And this is a girl that despite our best efforts, do not keep her hands out of her mouth, does not wash her hands unless we are there making her, does not practice on her own basic sanitation things that are recommended to keep someone healthy.

My pediatrician has noted Janey's lack of illness, and said she's probably in the 98% or 99% percentile in terms of healthiness.  He also noted it's something he sees fairly often in autistic kids.  I have my own theory about it, which ties into my favorite autism cause theory, that's it's an autoimmune disease.  I think Janey's immune system is hugely overactive.  I'm not a doctor or medically trained, so I could be extremely off on how these things work, but it seems that she attacks any potential germs with way more than the normal force.  And I would not be at all surprised if that is what happened when she had her big regression.  Somehow, her immune system went wild and attacked her brain.  

Whatever the reason for Janey not getting sick, it's a nice thing.  I am knocking on wood all over the place here, as I don't want to tempt fate.  I can't imagine how Janey would deal with a major illness.  She would have no real idea why she was in pain, and she would not at all like to have to take more medication.  But if getting a little more sick a little more often would have meant that Janey wouldn't become autistic---well, I think that would have been a fair trade-off.  But those aren't choices we make---they are made for us.

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.