Thursday, October 31, 2013

Trick or Treat or Not?

Halloween was my favorite day of the year growing up.  It seemed just plain magical.  You dressed up, went to people's houses, knocked on the door and they gave you candy.  What holiday in the world could be better than that?  Since we lived in the country, people got around to trick or treat by having parents drive them.  I used to think that the only thing in the world that could make Halloween better is to live in a place with LOTS of houses close by, so you could by walking get to TONS of houses and get tons of candy.  Bringing up my boys in a suburb-like part of Boston, that came true.  I loved every Halloween when they were little enough to go out----here's a picture of them looking extra scary one year!

However, with Janey, it was never as straightforward.  She went out with the boys once she was old enough, and I think I can remember her enjoying it when she was 2---excitedly saying "Treat or treat!" to people but not getting the candy part, which was cute.  But then she regressed, and although we still took her out with the boys for a few years, she was not really interested.  She often wound up in the stroller just observing.  Once the boys were big enough to go out with friends instead of us, I would try taking her to a few houses, and usually, she would pretty quickly balk and cry.  Last year, I took her to just one house, and she was not at all happy with that.  And so, this year, I'm not going to try.

I have to admit that it's hard for me to give up on Halloween with her.  It's hard to admit that she really has no idea what it's all about, that she doesn't enjoy it, that trying to get her to participate is much more for me than her.  She doesn't like to dress up, she is scared walking around in the dark, she isn't hugely motivated by candy unless it's just the kind she wants, and she hasn't got the ability to anticipate the fun, which I think is what makes holidays the most exciting as a child.  I remember counting down the days till Halloween every day of October, and when the day actually arrived, it would just seem incredible that it was there.  I'd daydream and daydream about the candy, about trading with my sister, about the way that bag full of treats smelled.  Janey isn't able to do that, I don't think.  She isn't going to feel left out not going out.  So why is it so hard for me?

I think as parents, we feel somehow like we should be completely altruistic.  We like to think we do things like helping Santa or buying birthday presents or making up Easter baskets to make our kids happy.  And we are right, but we also do it because it's fun, because it's a way to step outside everyday life, because we want to relive our childhood a little.  I don't think we are wrong to do things for our own joy some.  Not at all wrong.  That is part of what makes parenting a child with autism a challenge.  Some of the built-in joys of parenting aren't automatically there.  There are other joys, to be sure.  There are alternate joys, and they are real and wonderful.  But I will admit---I wish tonight I was dressing up Janey in a costume.  I wish she had woken up thrilled that the day was finally here.  I wish she was going to be fighting to keep on going to another street, even when she could barely hold all her candy.  I wish we were going to be negotiating over how much she could eat before bed.  I wish all that, and I will admit it.  I wish it for me, selfishly.  I wish it for Janey, as it's a joy she won't get to have.  I am struggling now to think of a way to close that is upbeat, and at the same time saying to myself "Get over it!  It's a minor issue in the larger scheme of things!"  So I'll let that voice of reason close for me.  Happy Halloween.

Tuesday, October 29, 2013

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

Monday, October 28, 2013

Perfect

For those of you who might not know, the Red Sox are in the World Series right now.  Living in Boston, it's hard to believe there are those of you in parts of the US or the world who might not be aware of that.  We are a Red Sox Nation family.  With the Sox, it's not even so much being fans.  Loving the Sox is more than that.  It's part of you.  And our family by fate keeps getting intertwined with the Sox.  Freddy worked this past summer for NESN, the station that broadcasts most of the regular season games, and he met a lot of players.  Tony used to work for the ticket office of the Sox when I first met him, and we got to go to the Red Sox Christmas party, an amazing event.  We used to work with a relative of Mo Vaughn, and got to go to quite a few games and sit with the players' families.  And of course, I grew up in Maine, solid Sox country.  Every summer, the game was on everyplace.  It was always there, in the background. It meant the most when my grandfather was watching.  He was old enough to remember the World Series win in 1918, and I wish more than anything he could have been alive in 2004.  But that's enough Sox talk.  I'm setting a background here for last night, as Tony, Freddy, Janey and I watched Game 4.

We had to turn off Kipper to put on the Sox on the "big TV" in the living room.  It's a sign of Janey's progress that we were able to do so feeling fairly sure that if she was upset by that, she'd get over it pretty quickly, and she did.  She likes it when we all are together, having fun and being loud, so she was enjoying the game for that reason.  She doesn't get baseball, much, but lately she's been very interested in a plastic wiffle ball and bat, and asks Tony all the time to "play baseball", which means he has to hit the ball and she watches.  We did that a little during the game, and got her to scream "Go, Sox!" and in general just were enjoying ourselves.

Then something prompted me to sing the beginning of "Away in a Manger".  I'm not sure why, because I try to save Christmas songs for at least after October.  Janey loves Christmas music, more than almost anything, and me singing the first line was enough for her to start singing the rest.  She sang the second line, and then the song switched to "America the Beautiful"  She sang a line or two, and then Freddy jumped in when she stopped, singing another line. They went back and forth like that for the whole song.  Both of them have amazing voices---Freddy's is deep and rich, and Janey's high and pure.  As I listened, the tears came, rolling down my face uncontrollably.  And I thought "This is perfect.  This moment right now, with the game on and my kids singing together---it's a moment from a dream. It's a moment from the dream we all have of being a parent, the moment where absolutely nothing could be better"  And thinking back, what strikes me is what was absent.  I wasn't thinking "This is perfect when considering Janey's autism".  At that moment, her autism wasn't a factor in any way.  It wasn't perfect with a footnote, or perfect with a "considering..."  It was just perfect. No matter what the future brings, no matter what the past has held, autism has no dominion over moments like that.

Thursday, October 24, 2013

The Scream

The Scream.  How do I describe The Scream?  It's hard to capture in words.  Picture someone who has just been told the worst news possible, or something who is undergoing the most severe pain of their life.  Then picture it suddenly, unexpectedly, coming from a sweet looking nine year old blond girl.  That is Janey's Scream.

Last night was a scream-fest.  Tony picked up Janey at afterschool, and she started the scream on the way home in the car.  By the time Tony got home, he was shaken.  He looked like someone who had just witnessed something horrible.  I took over.  About every 3 minutes, Janey screamed.  She screamed like she was in pain beyond imagining.  Her whole body stiffened, she turned red, she put every ounce of energy into the scream.  It was bloodcurdling.  Between the screams, she was fairly normal---a little upset, demanding, but not too bad.  But then---the scream.

Of course we tried to figure it out.  Was she hungry?  Was she hurting?  Did something scary happen?  We ask the useless questions that never get answered.  We try to comfort her, but the screams seem to put her in some world beyond our reach.

Finally, I took her into the bathroom.  I latched the latch that is up high, that she can't reach.  I told her we would stay there until she stopped screaming.  I didn't try to stop the screaming beyond that.  Between screams, she reached for the latch, and I repeated we were going to stay where we were until the screaming stopped.  The latch seemed to give her a focus, and although she screamed a few times more, she calmed down.  I told her we could leave if she was done screaming, and she echoed "ARE YOU DONE SCREAMING?"  We left, and a minute later, the scream returned, so we went back into the bathroom.  She didn't fight me about going there.  She screamed a few more times, and then again asked to leave, and we did.  No more screaming.  She was fine.  She woke in the night a lot, as she so often does, but it was cheerful waking.

What does this scream mean?  What causes it?  I have no idea.  In some ways, it seems to have replaced the crying.  Maybe it's some strange kind of step forward.  Maybe it's an expression of frustration, as Janey starts to realize that she is not able to do what other kids can.  Maybe it's something she does just because she can, a way of saying "I'm here!"  I just don't know.  Like so much else with Janey, I just don't know.

Wednesday, October 23, 2013

Including those who will never catch up

I got to Janey's school a little early today.  I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit.  Today was beautiful, a lovely fall day.  The morning play area was covered with leaves and sticks and acorns and all the things kids love like that.  Some boys were playing football.  Most everyone had on something Red Sox, in support of the home team playing in the Series tonight.  It was one of those great Boston mornings.  Janey was very happy running around.  Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.

It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents.  I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids.  I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.

I think this reflects society as a whole.  We embrace, often, disabled children, but disabled teens or adults make us uneasy.  There's probably a couple reasons for that.  One is that we like to think we can "fix" kids.  Sure, let them take a while to catch up.  Let them be around other kids, and have it "cure" them.   In time, they will be just like everyone else!  They just need lots of love and patience!  The other reason is kind of a vicious circle.  Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust.  "Look, that big girl can't talk!  She's making strange noises and waving her arms around!  We better steer clear of her!"  We're more tolerant of a range of odd behaviors in the young.

But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible.  The reasons for this might be different than when she was younger.  She's not going to catch up.  She is probably understanding less and less of the mainstream curriculum.  She's not going to suddenly be able to make meaningful friendships with the kids in her class.  But in a way, that's all the more reason to have her around them.  I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids.  I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less.  And it works both ways.  As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her.  By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute.  We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.

It seems like there is a point, an invisible line, where many professionals give up.  They seem to say "We gave it a shot.  It didn't work.  She's never going to be part of real life.  It's time to give up on that and find a place for her away from everyone else"  I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions.  Not from her school, not from her teachers or administrators  or aides or even the other students, but from the "experts".  Maybe she represents a failure to them, someone that didn't get fixed.  But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.

Saturday, October 19, 2013

I have to admit...

The last few weeks have been great ones for Janey.  She has been happy almost all the time, fairly talkative, good at school, fun to be with, aware of her toys and books as she has rarely ever been before---she has been a joy.  I wrote about how last weekend was so scary with her brother William, with college anxiety.  Thankfully, SO thankfully, he seems to doing much better now.  It helps us be able to help him that Janey was so happy.

I think I have a poor memory for emotional states.  When Janey is happy for any length of time, I forget how hard the other times are.  And when she's in a tough stretch, it's truly hard for me to picture how the good times feel.  But I do, after this long, always keep in mind that her emotional states seem to change about every two weeks.  I don't think she's ever had a very good stretch longer than two weeks.  She's had a few bad stretches that lasted maybe a month, but the VERY tough parts usually, again, are about two weeks.  The two weeks were up today, and on schedule, Janey broke down.  She barely slept last night, waking over and over to cry.  This morning, she was inconsolable for a few hours, just screaming, the new extra loud scream she's working on.  

However, gradually, almost unnoticably, over time I am realizing that she is able, with our help, to get her moods under control a little better than in the past.  It's not easy, but in the past, a mood like this morning meant the two weeks were starting, and that there was not going to be any letup for a while no matter what we did.  But today, Janey is now at least calm enough to be switching shows around on Netflix, and she actually watched The Care Bears for about half an hour---the longest she's watched a show in a while.  She truly does seem able to try, with help, to control her crying.  I think she's maturing, and we are also learning a little what to say to her and do with her to help her.  For example, this morning I realized she might be confused about whether today was a school day or not.  Tony was home, but he was home for a long time during the shutdown, so that got confusing, and Freddy left the house around the time he'd usually leave for school, for the PSAT.  So Janey might have been thinking "What the heck?  Is it a school day or not?"  I went over it with her, and whether that was it or not, it seemed to calm her down a little.  We also fed her a lot, which is one of the more reliable ways to calm her.  I dressed her---she doesn't care for lounging around in pajamas much, and I've figured out that with trial and error.  Who knows how the rest of the day will be?  But I don't feel desperate, as I have other days that started with crying.

I've heard from people with older girls or with adults with autism that it does get easier, and I think I can see how it works now.  It's not a miracle breakthrough, it's not a real change in the autism or in parenting.  It's little things, like gradually figuring out what sets Janey off and how to respond to her, or her learning, slowly but steadily, what we expect of her and how to control her emotions just a little.  When I say slow, I mean so slow that years can go by and you don't see a change, but one day you realize---"Gee, it's been a while since Janey screamed for two weeks without stopping!" or "Janey was crying this morning, but just now she's not!"  Baby steps.  Things that parents with only typical kids might see as no steps at all.  But I have to admit it's getting better---maybe not better all the time or so much better, so I can't totally quote the Beatles, but it's getting better.


Monday, October 14, 2013

Stress Times Ten

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

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

Wednesday, October 9, 2013

Why I am thankful for medication

I don't write a whole lot here about medication.  This is maybe because it's not something I ever wanted to be part of Janey's life.  If I had never had Janey, never been witness to her life, I'd be someone who, although I'd be too polite to say so, would judge people a little for giving their kids medication for what I'd call in my mind "non-medical problems"  So if you have had that thought, don't feel bad about it.

Tonight, though, I realized anew how very, very thankful I am to medication.  Let me tell you about the evening.  Tony took Freddy to a college fair at his school.  Before he left, he asked me if I wanted him to give Janey her evening medication.  I said no, because I figured he'd be back fairly early and could do it then, and I thought she'd be okay.  Well, the minute Tony left, Janey started crying.  It wasn't severe crying at first, and I mistakenly tried talking to my parents on the phone a little.  That set her off more, and the crying turned into screaming.  I got off the phone, but the damage was done.  Janey spent an hour screaming.  By this, I mean hysterical screaming, screaming like you'd hear if someone was being tortured or in agony of the worst type.  I tried every trick I had to calm her down---food, a bath, a backrub, calm talking, snuggling, TV---but none worked, not a single little bit.  She continued to scream so loudly that my eyes were ringing.  I tried looking right in her eyes and saying "You need to calm down.  You need to stop screaming"  She tried, poor girl, she tried.  She tried to take a deep breath, but her hysteria was such that she just couldn't.

Finally, I gave in.  I don't usually prepare her medication, but I know how to.  We crush pills in a mortar and pestle and dissolve them in water, as Janey can't swallow pills.  I got them ready.  Janey never, ever resists her medication.  In fact, she often asks for it.  Tonight, even though I'm not usually the one to give it to her and even though she was so upset, she took it eagerly.  I'm sure it doesn't taste great, but she just has a drink afterward.

Janey calmed down within minutes of taking the medication.  I am pretty sure there's a little bit of a placebo effect there, as I don't think it works that fast, but in a way, it's not really a placebo effect.  She knows the medication is going to work.  It does.  She knows she will be able to get control, to calm down, and anticipating that lets her use her own rudimentary self-soothing skills along with the help I can offer to calm down some even before the medication kicks in.  Once it fully kicked in, she very happily snuggled with me, played with her iPad some, sang to herself and then within 45 minutes, fell asleep.

I said at the start of this how I would have judged people for giving their kids medication for "non-medical problems".  Well, I think anyone who had seen Janey tonight would see that how she was acting was in a lot of ways a medical problem.  She can't function when she is hysterical.  She can't talk, she can't eat, she can barely breath well.  She can't certainly learn anything, or go anyplace, or enjoy life a single bit.  The medication that allows her to get through the days---still not easily, but to be able to learn a little, talk a little, enjoy food and playing and going places at times---is necessary.  It's completely necessary for her.  I think something clicked in me tonight.  The little part of me that still hated to give her medication, that still thought that I should be able to make her happier on my own, was converted. I am thankful for the medication, as I am thankful for anything that truly helps my girl.

Monday, October 7, 2013

Gold in the Ocean

I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water.  Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?"  I don't think most people do.  They love the ocean for other reasons.  Lately, I've been thinking about this a lot as a metaphor for Janey's brain.  I think there are amazing things inside her brain.  I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk.  But getting all that out?  Sometimes it's like getting gold out of ocean water.  To carry the metaphor further, I don't want Janey to be valued for what might be in her mind.  I want her to be valued for what she is right now.

But what if we could figure out a good method to get the gold out of the water, effectively and safely?  That would be great.  I'd go for it.  But say I tried and it didn't work.  Would I think devalue the seawater?  Would I think less of its beauty, and value, and usefulness?  I hope not.

I would dearly love Janey to be able to better communicate.  I dream of it.  I long for it.  But over the years, she has made very little progress in this way.   This was brought home to me today as  I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital.  I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now.  Her talking ebbs and flows, but it can in no way be seen as a graph going up.  She isn't talking more as she gets older.  I don't think if she ever will.  This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of.  There's a good chance we will never, ever hear the great things I believe are in her mind.  They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.

I want the world to value Janey just as she is.  But the biggest battle I have is with myself.  I need to truly accept Janey as she is.  I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more.  For example, last night Freddy was quizzing me on things he'd learned in school.  For fun, he quizzed Janey too, asking her to tell him a number.  We didn't expect an answer, but she piped up "Like, four?"  I was thrilled, and praised her highly.  I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered.  And as I watched her face, it turned from happy to confused to blank.  She tuned out.  I am sure I showed that I was thrilled by that glimpse of the gold in the seawater.  Do I act as excited when she claps along to her favorite bluegrass music?  Do I praise her for dancing around, for smiling, for just being herself?  I need to.  I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.

Sunday, October 6, 2013

The TV Standoff

About a month ago, Janey started turning off the TV any time something was on that she didn't want to see any more.  This would be fine, but she then turns it back on, turns it off, turns it on, all in rapid succession.  This isn't great for the TV, and is also pretty annoying, and it doesn't make her happy either---it sends her into a fury.  So we made a rule.  If the TV gets turned off, we unplug it.  No more TV for a while.  We are very consistent about it, and very firm.  So...you'd think that the problem would be quickly solved.  You'd think wrong.

Janey likes TV and videos a lot, sort of.  It's more like a love/hate relationship.  She likes certain shows VERY much, like Kipper.  However, after watching any show much, there are certain parts she likes and certain parts that scare her, or just bug her.  She used to get to those parts, and then ask us to watch something else, but I guess the turning off of the TV was a more direct way to handle the problem.  So we made our stand.  Basically, all it has done is stopped any TV  watching from happening.  If the TV is on, Janey pretty much immediately turns it off, we unplug it, she screams, and then eventually stops asking for it for a bit, then asks again, and after it's been a while, like two or three hours, we go over the rules again, put something else on, and she turns it right off.

I've always wanted to be the kind of mother with kids that just don't watch TV, but over the years, I've realized that I really don't care that much.  I think kids self-regulate, as long as you don't let it be all there is to do.  William watched a ton of TV when he was younger.  As he got older, homework and guitar took over his life, and he watched very little.  When he did, it was a history show.  Freddy never watched much TV.  He and I get into a few shows together---we were big Breaking Bad fans--and we love watching them, but TV was never his thing.  Janey liked TV more from the start.  I think a lot of kids with autism do, and I think they learn a lot from it, especially videos, which are always the same and which can teach in a way she relates to.  She isn't TV obsessed, but to be honest, there isn't a lot else that she enjoys as an indoor activity. She doesn't like to be read to, she doesn't know how to draw, she has next to no interest in toys.  We listen to and sing a lot of music, and I try very hard to engage her in other things, but TV has always been a big part of her life, and I've come to the point where I don't feel like I have to apologize for that.

And now, if we keep standing our ground on the TV turning off, there isn't any more TV.  Even if we don't, the TV is going to break from constant off and on, and we aren't in a great position right now to get a new one.  What do we do?  This reminds me of the taking clothes off outdoors standoff.  Janey can't take off her clothes outside---we are firm on that.  If she does, we bring her straight inside, which she hates.  She loves being outside.  But for a while this summer, she constantly took off her clothes almost the minute she got outside.  I don't think she really got it.  But we couldn't really compromise.  I think it was more that she got out of the habit finally than she accepted the limit, as she still occasionally does take off her clothes, and we go inside.

These stand-offs are another example of how "normal" parenting techniques just don't work with Janey, much of the time.  She doesn't really seem to get consequences. She has no desire to please us.  She isn't very good at thinking out how her actions will play out.  And so, although she very much wants her Kipper or Sing-A-Longs or Yo Gabba Gabba or whatever, she can't seem to figure out what she needs to do to still be able to watch them, just as she doesn't seem to get why taking off her clothes leads to an end of outside time.  Common sense would say that if we stand firm long enough, it will work, but common sense is not always right.  Even I am starting to miss Kipper the Dog.

Saturday, October 5, 2013

Moods without triggers

Sometimes, once in a while, I can figure out what has made Janey upset.  But far more of the time, I have no idea.  The same strangely holds true for times she is very happy. Her happy, contented moods also seem to arrive out of the blue and have no real connection to the world around her.  It's very frustrating, but in a small way, also a little freeing, as I start to come to see how little anything I can do seems to help or hurt.

This week, Janey was up and down, up and down, all around the place.  She had a terrible day at school followed by a great night at home, a great day of school followed by a tough night, whole good days, whole bad days, nights where she slept, nights where she didn't sleep---it was a roller coaster.  Her teachers and I try hard to figure out a pattern, but so often, there just doesn't seem to be one.  For example, this morning Janey woke up happy.  That was after a night with little sleep (but little crying, either).  We took her with us to a thrift store, which can sometimes be very bad news, and we were able to stay a full hour.  I think she behaved as well as any child in the world ever has at a store, special needs or not.  She stayed with us, was interested in everything but didn't grab things, had a smile on her face the whole time, was calm---it was fantastic.  We gave her high praise.  Tonight, although nothing really has happened to change things in the interim, she is screaming and crying off and on continuously.  I don't think it's tiredness, as when she's tired she just goes to sleep.  I don't think we set her off in any way.  I think whatever drives her moods is internal.

I was very affected by the book I read recently, "January First", about a girl with childhood onset schizophrenia.  I don't think Janey has schizophrenia, but I do think she might hear things we don't.  Sometimes there seems to be little else to explain what sets her off.  She can be sitting there, happy as anything, in a quiet room with nothing to provoke her, and suddenly she screams hysterically.  Sometimes after this, she'll recite a phrase for hours---usually something from a video or song.  She doesn't say it happily, she says it in a haunted sort of way.  I wonder if these phrases jump into her head and scare her.

Everything we do to try to keep kids happy, to try to reinforce good behavior, is based on assuming there is a reason for good or bad or happy or sad behavior.  And even if the reason is internal, it's a reason, but what if you have a child that is not usefully verbal, and they are being tormented by internal forces that make them sad?  How in the world do you deal with that?  I have no idea.  On the other hand, although it's much easier to take, how do you explain Janey's extremely happy days?  Nothing seems to cause them, either.

I figure out little pieces of things, as I have lately.  I can comfort Janey a bit better all the time, by constantly analyzing what seems to work to calm her down.  But as for figuring out her triggers---I don't know. I don't know if I ever will, really.  Maybe I just have to accept that---to take whatever Janey shows up each day and work with that.  It annoys me when sports announcers say things like that "The Red Sox just didn't show up today", when they played badly, but maybe that's a useful way to see it.  Happy Janey just doesn't show up some days.  Crying Janey shows up.  The next day, Happy Janey might be back.  Maybe I need to stop trying to fix her moods and start working harder to accept them, to live with them.  Janey, you never, ever stop making this parenting gig a challenging one.