Thoughts during the calm

Calm Janey

My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

Out of the Blue

We've been on a pretty good run with Janey lately.  She's settled into the school year routine, and has been fairly cheerful for a good long stretch.  It's been nice.  The time change did result in a sleep issue, where Janey wanted to go to bed about 4 in the afternoon and then wake around 1 am for the rest of the night, but that gradually seems to have gotten better.  It's times like this when out of the blue incidents truly can shake us up.

Yesterday here in the US was Veteran's Day, one of the few holidays that don't attach themselves to the weekend, but occur on the same date each year.  So we had the weekend, and then a day of school and work, and then a day off.  That is never a good scene with Janey, but she did fairly well yesterday.  Daddy was home,which is always a plus.  She was very eager to get out of the house, and we went to a few of her favorite places---Whole Foods for some "ham", which is actually a hugely expensive kind of salami she can always find there, and ToysRUs just to walk around and look at toys and find the few toys she already owns and play with them, to the exclusion of the millions of others toys.  So a typical day.  She slept fairly well, and we were looking forward to this morning, getting back in the routine.

All I can think of is that Janey felt today should be a weekend day.  After all, yesterday felt like a Saturday, albeit a strange Saturday after a one day week, so today should be a Sunday.  When it became evident I was trying to dress her for school, she went ballistic.  Every piece of clothing I tried to put on, she violently took off.  She arched her back and screamed at the top of her lungs "DADDY!  DADDY!"  So Daddy came in and tried to dress her, with similar results.  She is strong, and if she doesn't want to be dressed, she doesn't get dressed.  For 10 minutes, we struggled to get her into her clothes.  The screaming was deafening, she flailed out over and over, she was in a fury.  She tried to hit us, she lunged at us, she hit her own head over and over.  Finally, I think she just wore herself out, and we managed to get the clothes on.  Just in time, as I only was able to quickly brush her hair and teeth before the bus arrived a bit early.  I hope very much she stays calm for the day, but who knows?

I took a deep breath after she was on the bus and thought about the whole incident.  I tried to tell myself she's been quite good for weeks now, and that I should not be so bothered by the tantrum.  But I was.  I think it's the out of the blue nature of these fits that makes them so tough.  She goes from calm to absolutely 100% fury and fight in a matter of seconds.  The mind and body have trouble adjusting to that.  And I can imagine how it feels for her to feel that out of control.  The intensity of these episodes are such that I think in most childhoods, they would be something that would happen only once or twice, and be remembered always.  But with Janey, and with many kids like her, they happen often---not on a regular schedule you can prepare for, but suddenly.  It's like if a day was perfectly sunny, and suddenly a tornado touched down and ripped your house apart, and then lifted and was gone, leaving you stunned.

It's sudden explosions like today that make it  hard to ever totally relax as a parent of a child like Janey.  A day can be perfect, but there is always the knowledge it all can very suddenly blow up.  It causes a stress that never completely goes away.  It is a drain on optimism.  It must make life for Janey, even more than for us, feel like a walk in a minefield.

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

Bunker Hill Day

For those of you not familiar with it, Bunker Hill Day is a weird Boston only holiday, in honor of the Battle of Bunker Hill.  Not to dis any Revolutionary War battles, but I can't stand it.  It happens right near the end of the school year, when you are saying to yourself "Only a few days left of school!  I'll take full advantage of them!" and then all of a sudden, you realize one of those days you were counting on is actually a day off.  That was today.

Janey doesn't like days off that come in the middle of the week.  I think they confuse her.  She can tolerate them if Daddy is home, but Daddy was at work.  So it was a long day.  It did, however, follow the recent pattern of very rapidly cycling ups and downs.

I had planned to go to a local pond as soon as we were up and dressed, but Janey was quite content at that point to watch YouTube videos, so I changed plans and let her do that while I had my coffee.  Then Freddy kindly watched her for a bit while I read a little.  Then she freaked out and screamed for a while.  I calmed her down by taking her outside.  We had a pretty good hour or so outside.  I pulled out her big bucket of water toys, filled the bucket with water and let her play.  She loves water.  I would have stayed outside all day, but eventually Janey wanted to go in.  She was then at loose ends.  I tried reading to her, drawing with her, singing with her---none of those interested her.  It's so, so hard to find something she likes to do on a day without real plans.

Finally, it was time to take William to work.  The car ride felt like a treat.  Janey was calm, and I was able to not feel like I had to figure out how to entertain her.  After we dropped off William, I decided to go to ToysRUs.  I've done that a few times with Janey, with varying success.  She really doesn't get it it's a store.  For her, it's kind of a museum of toys.  I like going there with just her, and letting her take all the time she wants to look at whatever she wants.  Today, it was the Disney Princess aisle (yet another in a long list of things I didn't want a daughter to like, but at this point, if Janey is interested in something, I just go with it).  Janey looked at all the different Ariels, her favorite princess.  She didn't say much of anything, but at one point she smiled a huge smile and hugged me, which I took as a sign of her enjoyment.  Eventually I got her to look at a few other things, and she actually picked up a toy---a LaLaLoopy little pony with rubber band type hair.  She carried it around the whole rest of the time we were there, which is hugely rare for her.  We stayed about an hour, just looking at a few aisles.  Then a baby cried.  Janey cries plenty herself, but she has a bit of a double standard about it---nobody else can cry.  She screamed in displeasure, her hugely loud ear-breaking scream, and I decided it was time to go.  I was going to just put down the pony and make a run for it, but I asked her if she wanted to buy it, and she gave me one of her very rare direct answers---"YES!" So I did.

At home, for the next few hours before the magical moment when Tony gets home, Janey alternated between screaming her lungs off and being happy.  No real rhyme or reason I could see was involved.  Finally Freddy and I decided to watch a Star Trek episode, and put it up loud, as we have to when watching anything.  That actually calmed her down, and when Tony got home, things were pretty mellow.

So why did I write all about this somewhat mundane day?  Because it's illustrative of life with Janey.  It's very hard to engage her.  When I can, like with the water toys or the ToysRUs, I am so happy, and so is she.  But other times, I could try everything in my bag of tricks and the result would only be screaming.  I long for lazy summer days where we go to parks and museums and take trips into the city and read books.  But that is not really a realistic plan with Janey.  She is going to go to summer school for a month, something I truly didn't want to do this summer, but today reminds me that the kind of summer I daydream about just doesn't really work with Janey.  Or it does, for short spells, short spells that are completely unpredictable.  And so, tomorrow, back to school.  I am not the mother I pictured myself being, but I guess it's fair to say Janey isn't the child I pictured having, and we both are doing the best we can, most of the time.

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.