Middle of the Night Thoughts

No, Janey's not awake.  It's just me awake.  I've been having a lot of trouble sleeping the past few nights.  Thoughts and worries swirl around in my mind and keep me up.

Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day.  Today, the death number was 252----the highest yet.  Somehow, that really hit me.  I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day?  It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts.  It feels in this case like a terror happening off camera.  We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number.  It's terrifying.

And of course, I fear most of all that it will hit us.  How could either Tony or I do the job of being Janey's parent without the other?  Or what if Janey got sick? Or the boys?

We don't go anyplace.  Not at all.  Tony takes Janey for a car ride to no-where a few times a day.  We play with her in the driveway.  She hasn't set foot outside our house, driveway or car for over a month.  She would not wear a mask.  She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst.  She touches everything---when I take her for a walk, she runs her hands along walls and fences.  It is not safe for her to go out.  Even outdoor places in this crowded state are filled with people, many not wearing masks.  So we stay home.

Janey is still doing remarkably well being at home.  She seems to be thriving.  She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway.  Every day is quite similar, but she doesn't seem to mind.  It's a low stress life for her.  She doesn't really understand at all why we are home, and that is probably good.

A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists.  Janey tolerates this, and even seems to enjoy it for a few minutes at a time.  However, starting next week it's going to be every day, for 2 hours.  I have very mixed feelings about this.  I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework.  They need direct teaching.  But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time.  It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing.  But it has to do with Janey just not quite getting it.  She gets school.  She's been going to school for a long time.  She knows how that works.  But someone on a screen talking to her and listening to her and expecting her to respond?  I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know.  It's fun for a few minutes, but not for extended periods.

However, it's not like there are really any other options.  School can't be held in person right now, and everyone is doing the best they can with that.  It's not easy for anyone.  In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry.  Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.

What really keeps me up at night is how this is all going to play out long time.  People seem more divided than ever.  Instead of this pulling us all together, it seems to be pulling people apart.  That's crazy to me.  It's not a matter of politics here.  A virus has no politics.  But fear can cause divisions, anger, irrationality.  I can handle that.  But how I fear for Janey, and for all those out there who will always depend on others.  She needs a world that is secure enough to leave people feeling they can help others.  She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected.  I don't think the extremes on either side of any political rift really understand that.  She literally needs someone to watch over her, and she always will.  And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died.  God help us all.

Daddy's thank you to Janey during trying times

Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.

Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.

Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!

And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.

Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!

Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!

Thank you Janey for making me a better daddy and a happier person!

You are the best Janey!

As the quarantine continues...

First of all, I want to reach out to all of you with kids or someone else you love similar to Janey.  I hope you are all hanging in there, and I very much hope that none of you have caught the awful virus.

How are things here?  Well, mostly okay.  Better than I thought they would be a few weeks ago.  Janey had a terrible time adjusting to school being closed.  For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all.  And then, fairly suddenly, she seemed to get used to the new normal.  It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life. 

The new normal does have some hard parts.  One is sleep.  Janey's teacher has told me a lot of kids in her class are having trouble with sleep.  Janey seems to have chosen a random sleep schedule.  She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods.  It's tiring for all of us.  But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.

Janey also, like a lot of us, wants to do things she can't do.  We are being very, very, very careful about social distancing.  Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues.  We want to avoid it at all costs.  So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where.  Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony.  She is accepting no as an answer more than we would have thought, but she isn't happy about the nos. 

We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too.  Janey isn't too bad with the Zoom learning.  She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas.  Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that.  I think often how hard it would be if Janey were in a college prep type situation.  We can let this be a time of vocational learning.  Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.

My own stress has increased while Janey's has decreased, however.  I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights.  At first, we were able to order groceries online for delivery.  Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up.  At some point, we will have to shop.  That is going to be scary.  Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city. 

Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet.  We are lucky that we have a backup internet, much slower but still use-able.  But somehow losing the landlines and cable scared me.  I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line.  You have to talk to someone live.  I have no idea when they will be able to fix the wires.  I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress.  Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder.  I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.

If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness.  And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer.  Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation"  That gave me some nightmares.  But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.

Someday, this time will be over.  I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See"  They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost.  We'll get through this.  I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.

So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.

As honest as I can be, to those new at this autism parenting life.

For some reason, tonight as I tried to get to sleep, I kept picturing a parent out there somewhere, a parent who has just been given the official word they have joined our club, that they have a child with autism.  And I pictured what I would want to say to them, if I allowed myself to be completely honest.  Here goes...

First I want to say to you---nobody in this world knows how your child's life is going to look 5, 10, 20 years from now.  That's true for anyone, but from what I've seen, it's especially true for kids with autism.  Maybe your child will start talking if they don't talk now.  Maybe they will never say a world verbally.  Maybe they will learn to read, to write.  Maybe they will go to college.  Maybe they will never progress academically in any way.  Maybe they will have some talent that is incredible.  Maybe they won't.  The starting point, the point they are at right now, seems to somehow have very little impact on the eventual course of things.

And I honestly don't think that what you do, the therapies you get or the interventions you try or the diets you take on or the model of education you choose will make much of a difference.  Certainly many people will say I'm wrong there.  But it seems to me that our kids do what they are meant to do when they are meant to do it.  How we react to them, what kind of people we surround them with, that matters, but just how we try to teach or train or guide them, the methods we use, the resources we can or can't afford, the diets we chose or don't chose to follow, the methods we embrace, the toys we buy...don't worry too much about them.  Worry about surrounding your child with people who love her, who enjoy her, who want the best for her.

Pick your battles. Don't mortgage your future to move to the school district people say you should live in for the "best services".  Don't spend every waking moment pursuing a therapy that others have told you must be done in the crucial, special, essential time frame of "no matter how early you started, it wasn't early enough". But DO fight with the medical doctors when you know something is wrong physically with your child.  Fight to get them to take that temperature or give that shot or examine that stomach.  That is a battle you must fight, one of the few essential ones.

Don't let anyone make you feel guilty for being overwhelmed, for being tired, for being in despair at times.  Every single parent in the world has those feelings sometimes, but the big difference is that we simply don't get the breaks other parents do.  That is the huge difference.  Other kids go to friend's house.  Other kids can play sports or join activities or even just get to be 12 or 13 and be able to stay at home alone.  Other kids don't need to be watched every second of every day.  I don't think, often, it's that our kids are even tougher to parent than "regular" kids  It's that the parenting time we put in, over the years, is far more than with regular kids.  And when you never, ever get a break, it adds up.  You are going to have some very tough days.

Find some friends who get it.  Find them online, probably, because although it's much easier to find support groups for parents than any respite ever, you aren't going to necessarily or even probably meet the parents at these groups with kids like your own.  Autism takes so many forms.  Find someone with a child a lot like yours, and when you do, talk to them all you can.  Call each other often.  Email.  Visit, even if they live far away, if you can.  Use my Facebook group if you need a place to ask for a friend.  I honestly, truthfully don't know if I would have made it without my compatriot friends.

Give up on trying to reduce screen time, if you have a child who loves to watch the screen.  Believe me, I was the parent whose kids were going to play only with wooden blocks, who would live for books and shun TV.  But Janey loves videos.  I can't picture her life without the movies she loves.  They bring her great joy, and frankly, that brings me great joy.

Enjoy the heck out of the many, many parts of being an autism parent that frankly are just plain better than being a regular parent.  I enjoy having a daughter who will never, ever be catty or exclusionary to other girls, a daughter who jumps with joy because we are going to take her for a car ride, a daughter who loves vegetables with abandon, who has never once argued with me about clothes or told me I was ruining her life or in fact ever done anything deliberately to hurt anyone, ever.  Your reasons will vary, but believe me, there are great parts to being the parent of our kids.

Find ways to enjoy life even on the worst days.  Even on the days when Janey literally screamed all day, on the mornings after she didn't sleep all night, even in between changing bedding over and over, or dodging being bit---even on the days I can barely even think about---there was coffee.  There were stolen word game moments.  There were 15 minute naps after begging my sons to watch their sister when I literally couldn't keep my eyes open.  There were ways to live moment to moment to get through days that I didn't think would ever end.

More than anything else, I want to say that although it might seem right now like you've been given the worst news you can imagine---it isn't.  There will come a day when you realize that you can't possibly imagine your child being anyone other than who they are.  Just like everyone on this earth, they aren't perfect, but they are perfectly themselves.

Lip Gloss and Out of Place Cats

I went all of January without writing a post!  I know I write a lot less than I used to.  I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable.  There is less drama to write about.  But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!

The title here comes from an interesting insight I got into Janey last week.  Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch).  My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't.  But when she got home, we found a variety pack of lip gloss in her backpack, from H&M.  We were quite surprised!  Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss.  The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure!  They helped her put some on after buying it, and reports are that Janey was delighted.

I love finding out in ways like that what Janey likes.  I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home.  It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother.  I often think about how much of Janey's life is controlled by others.  I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much.  I would love to know what clothes she would LOVE, or what activities she would adore.  It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.

The out of place cats?  Janey likes order.  She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved.  This need for order extends to living beings. The cats frustrated her constantly with their randomness.  They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor.  Our older cat, Tommy, spends much of his time now in the bathroom, sleeping.  But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be.  We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile. 

We as humans have learned to give Janey the order she needs. It makes things a lot easier.  But at times, as the years go on, it wears us down, to be brutally honest.  For example, the living room, when Janey is home and awake, belongs to her.  It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing.  But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain.  In the car, the music is Janey's choice.  We listen to what she wants to listen to, and change songs when she says to.  What the rest of us want to hear doesn't get heard.

I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions.  Many people might say "Those parents need to get control back!  They are giving that girl way too much power!"  Or, conversely, they might say "Why is that mother complaining about the small stuff?  Didn't she just talk about how little Janey can say what she likes?  Doesn't she remember how hard things were in the past?"

To those who might say Janey is being given too much control---well, that has been a choice.  We made a choice to do whatever we could to give Janey more happiness.  She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard.  There is still so much in life Janey can't control, can't completely understand.  There is much in life she isn't going to be a part of.  So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.

But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint.  Sometimes, Janey's needs wear us down.  They wear us down because there are no breaks, no credit saved up.  We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down.  Badly.  And once she melts down, her mood can be affected for literally weeks.  It's like her world starts to feel out of balance, and it takes a long time for it to feel right again. 

If you don't have a child like Janey, you might be thinking "She'd learn in time!  She just needs to learn that she can't always have things her way!"  To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10.   Those were the years we gave their wise advice a try.  Those were some very tough years.  We tried, for many years.  It was a failure.  Janey was very unhappy, and we were very unhappy. 

So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up.  We can stand to put her happiness first.  It's what we have chosen.  However, I'm not going to be afraid to admit it is hard.  I don't think I'm doing Janey a disservice to say that.  I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times.  That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can.  It means we are human beings, doing the best we can.