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.

Summer Report

Roll out those lazy, hazy, crazy days of summer.  I guess.  I am not a summer person, as people who have read this blog probably know, but this summer hasn't been bad, as summers go.  There was the non-sleep period, which I will never, ever say is over, because I fear a jinx more than anything, but, well, it's better.  Janey has still been often getting up extremely early, but lately, she is into Netflix on her iPad, and watching longer movies, even ones she's never watched before, and it's allowing us to drowse a bit while she's awake.

The big difference this summer, of course, has been having Tony home.  It's wonderful.  I said just before the summer started that it was the first summer I haven't dreaded, and I was right not to.  Parenting Janey is really a two person job, and Tony and I are both more rested, even with the non-sleeping issues, than we were in past summers.  

Another very nice thing has been summer school.  Two years ago, I took Janey out of summer school in the middle.  She was miserably unhappy.  It was the only real time I'd ever seen her crying because she didn't want to get on the bus, and she would come home crying, and I was getting emails from the teacher a lot of the type that say "Do you have any ideas about keeping Janey happy?  Is there something different at home?" to which I always have an urge to reply something like "Oh, yeah, I forgot to mention that we moved because the old house exploded---it just slipped my mind!"  I'm just being sarcastic here, but I do tell teachers if something big is happening at home, and to be fair, I don't get that question often.  So we cut our losses that year, and I was gun-shy last year and decided to just keep Janey home from summer school.  But this year, I thought we'd give it a try again, and she's been VERY happy there.  Her (different than two summers ago) teacher seems great and he stays in touch about positive and less positive things, and he sent me a happy picture of her from Friday, which is something I very much love to get.

Janey is continuing to seem more like a teenager all the time.  Her most used phrase with me is "Want to go away?"  She says this any time I'm in her space, and her space is often much of the house.  I take it with a laugh, though.  It's cool to see her wanting space, and I want to give her as much as I can.  It makes me sad, a lot of times, how little true independence her life is going to have, and I feel like it's important to give her any agency I can about how she spends her time.  It can sometimes get a little severe, though, like when her brother Freddy came home from work and said hi to her, and she replied "NO! Want to go away?" and pushed him.  But I remind myself her vocabulary is limited, and she's getting her point across.

One interesting development is how Janey has been using the TouchChat AAC app on her iPad.  I started with it a couple years ago with great hopes.  Janey has never really used it to talk, though.  She likes it, and she says, many hundreds of times "I don't want to listen to CD" which might sound like it's saying something, but it's what you get if you hit the exact middle of each screen in a row.  I think she likes the way it makes a sentence, and she doesn't ever listen to CDs anyway.  But for a while, when Janey is very upset, I have been pulling up the feelings screen on the app and asking her to tell me how she's feeling.  She usually picks happy first, even when she's very obviously not happy, but then she picks something else, sad or frustrated or angry or tired.  And she calms down.  Like a miracle sometimes, she calms down.  It's like being able to label the feeling helps tremendously.  Today, for the first time ever, when she was upset, she went to the iPad and went to that screen herself, and 

calmed herself down.  I was very, very happy.  I wish she'd use the app more, though.  I use it often around her, and she easily remembers how to get to various screens, and it's always available for her, but she has made plain that's as far as she wants to go with it for now.  And if I pushed her more, I'm 

quite sure she wouldn't be as eager to use it in the limited way she does as she is now---that's my Janey.

Of course, what comes next is high school, and I am nervous day and night about that.  I feel confident we picked the right program for Janey, and I am very happy she can go where we wanted her to go.  But still...it's a new school, and it's a LONG bus ride.  It's on the opposite side of Boston, and if you know Boston traffic, you know it might well take an hour for her to get to school and an hour to get home, on tougher days, and some days, probably more than that.  She loves the bus and she loves rides, or we wouldn't even consider that, but I worry about her needing to use the bathroom while she's on the bus, I worry how she will react if the traffic completely stops the bus for long periods, I worry about other kids on the bus...I worry about everything.  I keep telling myself to wait and see how things go before all the worrying, but that's not my way of doing things, usually.

I was helped more than you know during Janey's no sleep nights by posting on the Facebook companion page to this blog, and reaching out to the other mothers in no sleep land, the ones, as Claire so incredibly well put it, awake at silly o'clock, as those hours in the middle of the night should be officially named.  Thank you, as always, for getting it, all of you wonderful people.  I hope you are having summers that are better than you'd worried they might be!

Unclouded day after

I was discouraged yesterday, as you might have read in the post I wrote.  Last weekend was long, with a lot of screaming and crying from Janey, more than any weekend this summer.  We had gotten used to the sunny Janey.  For so many years, a troubled day with Janey led to a troubled few weeks.  It's hard to believe, to accept, that Janey does recover much more quickly than she used to.  Even after school yesterday, she was happy.  And then there was a "toileting incident", the kind that takes a long time and many loads of laundry to take care of.   I wrote my discouraged post, and linked to it on my Facebook page.  And so many people responded.

I don't think I can ever really explain how much the support of others helps me---others living this life, or those who understand it.  I can't even imagine what it felt like to be a mother like me in the days before the internet.  I would feel, I am sure, like the only person on earth with a life like mine.  Instead, I know there are so many others who get it, who pick me up, who have helped me through some very tough times, who have rejoiced along with me at the good times.  When I woke up this morning, not sure what the day would be like, and read all your comments, read the kind words from Mary and Maura and Catherine and Fab and Kathleen and Maryann and Cynthia and Aileen and John and Rachel and Michelle and Nancy and Shanti and Antti and Grace and Julie and Sophie and Beth---wow.  For some reason I went back and read again about times during Janey's two long hospitalizations, and the overwhelming kindness shown to me by so many then, and I thought about our recent visit to meet Michelle and her wonderful family in person, and I thought about my husband and sons and extended family, and high school friends I have reconnected with on Facebook,  and people like Maryellen, who sat with me during so many days in the hospital---and I was overwhelmed.  I hope you all know how much you mean to me.

 So---today is better.  I had a wonderful morning with Janey before she got on the bus.  She was happy, calm and engaged.  We did our favorite walk, to the "ice cream store", and she picked out not chips or ice cream but a jar of salsa, and we waited for the bus listening to "I'm Gonna Wash That Man Right Out of My Hair" and we smiled and hugged each other and enjoyed the summer weather as we waited.  It felt like the unclouded day in the song Janey loves so much.

Summertime, and the living is...not so hard

Yes, I wouldn't call the living easy, but it's closer to easy than it usually is with Janey.  Here's an account of a typical day this summer with Janey....

8 am ...  Wake up.  Janey has shown that left to make her our schedule, as I pretty much do with my kids in the summer, she is a night owl.  She's been staying up late and wanting to wake up late.  Actually, thinking about it, 8 am is not that late, but in our family of mainly larks, it is.  

8-9 am  Get ready for summer school.  I tell Janey it's a school day as soon as she wakes up, along with any other vital information about the day.  The problem with that is that she's always ready to move on to the next part of the day, so if it's a school day, she wants to be out waiting for the bus.  I delay her as long as possible, but we always wind up waiting for the bus long before it actually comes at 9.  Some days, there's screaming and arm biting as she gets tired of waiting but it's too late to go back in, but most days, it's been okay.  I sing some special bus waiting songs, mostly songs from Oklahoma, which for some reason I've sung each summer as we waited for the summer school bus.  I comment on each car or truck or bus that goes by, using my excited voice, which tends to keep Janey happy.  And then the bus arrives, and she hops on quite readily, to head off to the black hole of summer school.

9-3  I call it the black hole of summer school as I have little idea what she does there.  Her teacher does write now and then, and I know there's ABA and going in the sprinklers and breakfast and lunch, but of course Janey tells me nothing about her day, not a word.  That is a tough part of having a minimally verbal child.  Her life when not with me is a blank to me.  However, she seems happy!  I do dishes and laundry, and garden and play Scrabble on Facebook and try to make myself clean, and usually sneak in a nap.

3-4  The Waiting For Daddy Hour   Tony goes into work very early in the summer, so he can get home around 4.  Janey knows EXACTLY when he should be home.  I don't know if she can tell time somehow, or is just a very good judge of how long time chunks are.  But every day, about 3:45, she asks to "go see Daddy", which means walk down the street to meet Daddy coming home from the train.  If Daddy is late, or takes the train that comes in a different place, it's not very pretty.

4-6   This is Janey's favorite time of the day.  It's when Daddy does one of three things with her, sometimes all three.  He takes her for a ride in the car, a ride to nowhere, just cruising around and listening to mix CDs he has made for her.  She's become a huge fan of The Animals and The Monkees, and it's mostly those they listen to, with a few other songs thrown in---some Black Sabbath, some Beach Boys.  If they aren't riding in the car, they are cooking together.  Janey's favorite is "soup", which means kale or collard greens fried in oil and topped with hot sauce.  The third activity is a fire in a little fire pit Tony got.  We of course watch her extremely closely during this activity, but she adores looking at the fire.

6-9 (or whenever) This is video or TV time, combined with YouTube and iPad time, with occasional snack time or brother time thrown in.  Janey is in love especially with one movie this summer "The Little Mermaid 2:  Return to the Sea"  I am not sure what the appeal of it is, but we know it by heart.  There's also a lot of Word World and some Little Bear thrown in.

9 TV unplugged time, bed time.  We have to unplug the TV, as when Janey gets tired, she gets dissatisfied with shows after about a minute.  Most of the shows she likes are on Amazon Prime, which we have to use a password for, as otherwise, Janey can and has bought shows that aren't included in our membership.  So we are called upon to enter the password every time she gets tired fo a show, even if she just wants to watch a different episode of the same show.  We do let Janey have the iPad in bed.  It doesn't keep her awake, as once she's ready to sleep, she sleeps, instantly.  There is no drowsy period with her---she's wide awake or fast asleep.  Some nights, she's up until 10 or 11, but I'd say 9:30 is a good average.

So....we are hanging in there.  I left out a lot of times that there is screaming or arm biting, not just to make the days look better, but because these episodes are far shorter than usual lately.  We can edit them out of our days because I'd say the longest they have lasted all summer is half an hour in a row, which in the scheme of things, is very short.

I think we've been catering to Janey, to how she likes things, more than other summers.  I am sure this has to do with her time in the hospital.  We needed to keep her fed and keep her calm there, and once she first came home, at all costs.  It was a life or death matter, and I am not overstating things to say that.  And I think we realized, after doing that for a while, that we were all happier if Janey was happier.  We don't bother as much to say no to the little stuff.  If Janey needs a ride, if Janey wants to wait for the bus early, if Janey desires 5 viewings in a row of Little Mermaid 2, who cares?  If we are creating a monster...well, we aren't.  We are creating a happy girl, and one who because she is happy is making us happy.  We've done more family drives and had more of those spontaneous little good times than in years this summer.  I'm going to write more about some thoughts about what I'd call a new approach to life with Janey, but for now, I'm going to go meet her bus, cut up cheese into thin slices while she watches, the only way she likes cheese, put on a show and then change it if she needs it, and walk to meet Daddy.  And I'm glad to do it.

Turning a negative ritual into a positive ritual

Whenever I write about something that has worked with Janey, I feel I have to say that I can't promise it will still work a day later, to say nothing of anything longer term than that.  But today's little triumph was very interesting to me, and I wanted to share it even if it doesn't last.

This all got started after I wrote a despairing post on my Facebook page that is a companion to this blog, about Janey screaming over and over and how it made it so impossible to get out of the house.  One of my great Facebook friends, Audrey, posted a link to this site, which talked about a method using a clicker of reinforcing good behaviors in lower functioning kids with autism.  The click clearly tells them they have done a good job, and they get a reinforcing treat for that, eventually not every single time, but after a certain number of good times.  The article was followed by some pretty extreme comments by people that didn't like this method at all, and felt it was treating the kids like "animals", but I didn't feel that way.  It seemed like a pretty mild and easy way to tell kids they were doing well, by making a sound that wasn't used for any other reason and then by reinforcing good behavior, like "quiet mouth" (not screaming)

However, the problem with this method for Janey is nothing really works as a positive reinforcer on a long term basis.  She doesn't have any food she always likes that can be easily given as a treat, she doesn't care about stickers or little toys or anything like that.  And I am not sure she'd get having to wait for more than one instance of good behavior for a treat.  Thinking about it, I realized her favorite reinforcer is just plain praise, given in a way that's part of a bit of a ritual.  Lately, when she's done something very good, I say "Great job!  High five!  Thumbs up!  A-OK!", and give her a high five, a thumbs up and a symbol of A-OK with my fingers.  She loves that.

So, I waited until a minute she wasn't screaming, and said "Great job not screaming!" Then I went through the whole routine.  I did that about 10 times in a row, keeping on saying what a great job she was doing not screaming.  And then I waited, and didn't have to wait long, for her to ask the question she asks a million times a day "Want to go to Maryellen's house?"  If I say no to this request to go to my friend's house, she screams.  So this time, when she asked it, I said "I'm going to say no, and if you don't scream, I will say 'Great job not screaming!' and give you a a high five and thumbs-up and A-OK!"  I then said "No, we can't go to Maryellen's house" and without any time in between for her to start screaming, immediately started the praise routine.  She looked surprised and kind of pleased.  I said "Let's try it again!  Ask again to go to Maryellen's house!" which she looked positively startled to hear, as usually I try to discourage that repeated question.  She asked again, and I again did the praise routine.  We did this over and over, each time leaving a little more time for her to maybe scream after I said no, but she didn't!

I was worried when she asked again a few hours later, it wouldn't work, but she asked with a look in her eyes that let me know she was waiting for the fun praise routine, and I gave it to her.  She did the same thing about 10 more times later in the day,  and every time, she didn't scream.  I felt a rare feeling of having actually accomplished something with her.  Maybe I've turned a question that had become a ritual of anger into a fun ritual.

Janey has been cheerier this afternoon than she has in a few days.  I think I might have finally found something she actually does get reinforced by, and it's not so much praise, although that's a part of it, as it is a set routine.  I have been letting her set the routines, and they were not routines I wanted.  I think I need to try to set the routines and rituals myself, at least some of the time, and try to make them positive ones.

We'll see if this keeps working!

A trip to the library

As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday.  She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?"  That was a surprise to me on many fronts.  She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like.  I was truly stunned.  And happy---I love the library!  So I told her we would go after school today.

However, that plan got moved up in the day, due to Janey's bus never showing up.  This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus.  We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!)  And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again.  I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)

So---we went to the library around noon.  Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her.  It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.

After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room.  I kind of knew that Janey's picture of the library was not accurate.  I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun.  She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch.  But I figured we'd see what she thought.

Janey very briefly looked at the picture book section.  I told her she could pick out any books she wanted to take home, but she had no interest in that.  Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms.  When I saw that, I screamed "STOP!"  I didn't use a library voice.  Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code.  I felt like saying to them "I was once you.  I used only gentle tones.  I explained everything carefully to my children.  I would have sat down with you and made friends and arranged a playgroup.  However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms"  Instead I just said "She is autistic and a little unpredictable"  They all smiled an inclusive smile and we went on our way.

The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books.  She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf.  Then she went back to the picture book section and I again said she could pick a book.  Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist.  I hissed out "LET GO NOW" and she didn't, but I got out of the grip.  I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go!  We'll try again another time!"  The librarian was very sweet and offered Janey a sticker, which she took.  I checked out our books and we blew that joint as quickly as possible.

So...what's the lesson here?  Partly, that I probably should not have attempted the library alone with Janey.  She easily could have hit the baby or seriously hurt me.  But in a way, I'm still glad I did.  I need to get Janey out there, to have her be part of the community as much as I can.  It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.

The whole deal does illustrate why giving Janey a "normal" life is so hard.  There is so, so little I can do safely with her any more.  It is why inclusion, in so many meanings of the word, is challenged by a child like Janey.  And it's why parents like myself, and there are lots of us, so very much need help.

Always open for advice

First, just a note that Janey slept much better last night.  She seems better today---not super happy, but very little crying or screaming.  Thank goodness.

I've been thinking a lot about advice lately.  I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice.  I never want to make anyone feel that way.  People often say to me "I know I have no idea what it's like to being going through what you are going through".  Well, that's true, but that's true for anything anyone is going through.  None of us truly know what another person's life is like.  I know that everyone has tough challenges, and everyone has situations that are unique to them.  But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation. 

For me personally, advice is never unwelcome.  I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it.  I need all the help I can get.  

I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them.  I never want to be like that.  Janey is tough.  I'll never pretend she isn't.  But I have a lot of wonderful things in my life.  She is one of them.  She is a wonder to me, so often.  And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them.  I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet.  I am lucky in so many ways.

There are days when I feel very alone.  There are days when everyone feels very alone, I know.  But I know I'm not alone, and I am so glad I'm not.  So please, if you have ideas, advice, stories---never ever hesitate to share them.

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

Facebook Group

Just a little note to say I formed a Facebook group, which can be found at

https://www.facebook.com/groups/469492299792055/

I thought for a long time before forming a group, because I've always kept Facebook a little separate from my life as Janey's mother, kind of as a refuge from autism.  But I realized I really do want a way to be in touch with all the wonderful people I've met through this blog, and a way to get to know more of them.  I also realized I'd like to post more about Janey than I thought some of my friends might be interested in, so I wanted a separate place to do that!  Please feel free to join this group if you weren't already invited---I could only invite people who had friended me on Facebook.  I promise I won't send out millions of posts!  I feel a little funny about forming the group---it feels kind of like self-promotion or something, which I don't want to do, but I decided my desire to be able to interact more with my friends from all over who read this blog was more important than that fear!  And if you read this blog, I consider you a friend!

Isolation and Autism

For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual.  Most of the time, I am okay with being a bit isolated.  I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too.  I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play.  But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family.  The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.

There's a lot of ways autism isolates.  I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place.  We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that.  Most of the time, we don't even consider such expeditions.  They just are out of the realm of our lives.  We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.

Also, when you have young kids, the main way you meet friends is through your children.  Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends.  You take your child to the playground, to lessons, to sports, to activities, and you meet people.  With Janey, that doesn't happen.  She doesn't get invited to people's houses.  We can't casually go to the playground.  The activities she can do often cost a great deal of money, which we can't afford.  We take her to school and bring her home.  That is what she does.

Autism also puts a strain on old friendships.  It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be.  I forget birthdays, I am not there to listen, I can't get together without planning.  I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.

As for couples events, that just doesn't happen.  Tony often gets together with friends from high school.  I have never met most of these people, although they sound great.  If Tony is going out at night, I must stay home with Janey, unless the boys can watch her.  During the school year, that is mostly impossible.  They have tons of homework, or their own activities.  If we are going to be out at all late, we don't feel right leaving Janey home with them either.  So I stay with Janey.

There's also just the exhaustion autism brings.  During the day, when Janey is at school, I either work at home, do housework or nap.  I don't use the time for socializing much, or nothing gets done.  It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.

I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends.  Last night, I felt frustrated and alone and needing to talk to someone.  That's not the kind of thing I'm going to post on Facebook, or email people about.  I could have called a friend, but it was late.  That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time.  I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.

So do I have a solution or point here?  Not really.  It's just the way it is.  To have friends, you need to be a friend.  We tell that to kids, and that's the problem.  I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.

Dependents

I am not a very political person.  I don't have passionate political views on most issues, and I try to keep an open mind.  I have good friends on either side of the political divide, and I can see the reasoning behind their differing views.  There are a few issues I generally base my votes on---education and autism.  Not that many politicians directly address autism, but I look at what they say about disability issues in general, or if there's nothing there, other closely related issues.  It's the only way to decide that makes sense to me.  I don't know enough about the economy or foreign affairs or the budget to make a reasoned decision, but I know enough about education and autism to decide fairly well.

That being said, I want to quote my friend Michelle's post on Facebook yesterday (hope you don't mind, Michelle!).  It was on my mind all night.  It was so well said.  Here it is...

One day I'll be dead, and my child will be dependent on the kindness of strangers (taxpayers) to keep her alive. I sincerely hope and pray that society does not cast her aside for being an entitled, freeloading victim. Please put yourself in my shoes for one terrifying moment.

 That got me.  That really got me.  Because that's what it comes down to.  Someday, Janey will be dependent on the kindness of strangers, of those who make the decisions how money is spent.  Baring miracles, Janey will never work at a job that can support her.  She will always be dependent.  This is not her choice.  She would have no idea what being entitled means.  She is no freeloader.  She is the result of the chance we all take when we have children, when we, in fact, just live another day.  None of us know when it will be us that fate decides to disable, or to give a child with disabilities to.

I know there are freeloaders out there.  I know there are those that feel entitled.  But Janey, or indeed our family, are not them.  We most certainly pay taxes.  We get no money from the state or federal government for Janey.  Some day, she might quality for Social Security Disability, and at that point, I will apply for it, but right now, we support her.  And we pay Social Security taxes to support others like her, that are not in a position to support themselves.  And we do so gladly.  No-one likes taxes, but they are the best system devised for making sure there is a safety net for those who need it.

There are always going to be dependents in this society.  Or at least, I hope there will be.  A society that doesn't want any dependents scares me.  There are always going to be those born to need lifelong help.  And I dare say we are all better because of it.  When I see all the children at Janey's school with Down Syndrome, with cerebral palsy, with autism....I see some wonderful, amazing children that bring great joy to those around them.  Do we want a society without those children, without the adults they will one day become?  Do we want a society where there are no dependents?  I hope, for the sake of Janey and all those like her, that we most certainly do not.

A Facebook page

I joined a Facebook page (I guess I "liked" a Facebook page, so I get the posts from it, technically) today, http://www.facebook.com/AutismWithASideOfFries So far, I really like it, as it seems to concentrate on the lighter side of autism---lots of those little old-fashioned looking postcards Facebook does, or other memes (I learned that word from my boys!) about autism. It's great to be able to laugh at my life a little. It's something I think a lot of professionals working with autistic kids don't get (although those at Janey's school are mostly an exception---thanks for the times we laughed until almost crying, you guys!) I've read books that were so deadly serious that I finished them crying. Of course, autism is a serious thing. It's very, very serious, but at times, our kids and our lives in general can be very funny---sometimes black humor and sometimes just plain old funny. And it's not wrong to feel that way, I don't think. I loved something I saw on the new page, along the lines of God creating autism to offset the amount of boring people on earth. Janey is rarely boring. She's lots of things, but she's almost never boring. And the fellow mothers of kids with autism or other related issues I've met through this blog are some of the funniest folks I've ever met (yes, I'm talking about you guys, Michelle, Sara and the rest!) And so it's great to be able to, in the midst of the tantrums and the spills and the crying and the sometimes despair, laugh my head off from time to time.

Facebook Scrabble and the House of Cards

Scrabble on Facebook hasn't been working for a few days. And you might well ask---so what? You might wonder why I don't just pick up a board and play a live person, as my sister asked and as I'm sure other people wonder. Why am I so upset an on-line game isn't working?

Well, it's all part of the house of cards. Let's just think about what real live Scrabble would involve. I'd need to find someone who wanted to play. I would need to go to their house, or have them come here. I'd have to find a time when someone else was watching Janey. It would have to be a good solid block of time. Even if I could do any of this, the chance of finding someone I could play at about my level (which I would call intermediate) would be not great, and even in the best scenerio, I'd get to play them about once a week, maybe.

Now think about on-line Scrabble. I have about 6 people I can play with. I can play a turn any time I have a minute. I can watch Janey while playing, or wait until she's being watched. I can play in the middle of the night, if I wake up and can't sleep. I can chat with the people I'm playing with, through the chat box in the application. I get a little boost many times a day, a chance to use my brain, to do something that has absolutely nothing to do with autism. I get a break at my convenience. I get a little socialization. I truly enjoy the game. It's sometimes I've come to depend on, to need.

And it's all part of the house of cards. People might laugh at someone being upset that a stupid Facebook application doesn't work, but when you are a full time caregiver for someone like Janey, when you cannot simply go out and socialize when you feel like it, when so much of your life involves cleaning up diapers and keeping a child from tossing food around or crying hysterically for hours, when the best chance at entertainment you often get is re-watching an episode of Kipper you've seen 100 times, well, the little things like Scrabble take on a huge significance in your life, and not having them might be the difference between sanity and not.