Unlikely things autism has made me say

We never spill Cheerios all over Freddy's bed.  That's not funny!

We don't eat mayonaisse/ketchup/duck sauce all by itself.

Yes, she's eight.  No, she's not toilet trained.  Yes, I've tried all the methods out there.

No, I haven't put her on a gluten free diet.  

We NEVER take off our seat belt in the car and go into the front seat and hit Mama.

No, we can't go buy chips right now.  It's 3am.

Even if you put on your shoes nicely, we aren't going to the store right now.  It's 4am.

Please go back to sleep.  I'm not talking about chips any more.

Tony, could you just go buy her some damn chips?  It's 5am and I haven't slept.

No, I don't know what caused her autism.  Do you know what caused you to ask questions like that?

No, I don't think vaccines had anything to do with it.

Janey, please, if you make a stinky on the floor, tell Mama or Daddy about it.  Don't make us hunt it out.

If there were all kinds of great free respite services for autism out there, don't you think I'd be using them?

I really appreciate the thought, but a toy with 100 small pieces she could choke on is not really something we need, even if Janey does fall in the age range on the box.

No, I don't know how I do it either.  

That's enough pickled vegetables for today, Janey.

I know your dog wouldn't hurt a fly, but the fact you and others let dogs run free and knock down my daughter who is terrified of dogs has caused us to no longer be able to go to most parks.

Big girls don't take off all their clothes.

We just had two baths today.  That's enough baths.

We don't brush our teeth 20 times a day.

No, Janey doesn't really have any beer on ice and all her rowdy friends aren't coming over tonight.  She just is a Hank Jr. fan who \memorizes songs and sings them at random times.

Thank you, teachers and aides and therapists and staff of Janey's school.  I think I'd be dead without you, without a place to take Janey where I know she's safe and loved.  I wouldn't make it.  Literally.

Janey, I don't think it would be possible for me to love you any more than I do.  I wish you were going to have an easier life.  I wish you could communicate more.  I wish you could tell us what makes you sad.  But that doesn't change the fact that you are one amazing kid.

You catch more flies...

You catch more flies with honey than with vinegar.  That's a phrase I heard often from my mother, and it's a true one, one I try to keep in mind.  Sometimes, with Janey, it can seem like it just doesn't work.  Nothing seems to work---honey, vinegar, being patient, being strict, being anything.  But I was in despair over the seat belt situation, and decided to try some honey therapy.

I thought about what has worked in the past to keep Janey happy in the car.  The unbuckling mostly seems to happen when Janey is upset or restless, and wants something I can't get her while driving or in the car at all.  It follow that if I keep her happy and occupied, she will be more likely to stay in her belt.  So I downloaded a whole bunch of versions of her new favorite song "Turn Your Radio On"  I wish there were more versions even of it out there, but I found 7 or so.  Then I stocked up on her favorite car snacks---Pringles.  I decided that during the drive, we'd keep her music playing and her snacks flowing.  I did that for the last few rides---success!  Janey was happy and content, and no seat belt taking off!  I praised her heavily after each ride, which usually doesn't seem to affect her either way, but in this case, maybe because I had been SO loud and angry about the unbuckling, seems to make her very happy and proud.

I don't pretend the problem is solved, but my point here kind of is that once again, I had to learn the lesson that Janey is not typical, and that I can't always follow typical kid rules with her.  You would really think I'd know that by now.  But I was feeling angry and upset over the seat belt, and I didn't feel like "rewarding" her for bad behavior.  What I wasn't keeping in mind is Janey doesn't think that way.  She doesn't do things to please me, and as a converse, she doesn't do things to make me angry.  She doesn't manipulate, or at least not in that complex a way, I don't think.  She certainly wasn't thinking "I'll be bad with my seatbelt for a few days, so I can get Mama to do anything to keep me happy, and then I'll score some good tunes and snacks" She isn't thinking that way.  I have to, at this point, do what works, without worrying about whether it's Parents Magazine approved, because Janey isn't Parents Magazine approved.  She doesn't follow the rules, so I am sometimes forced not to, either.  I need to be able to drive without fear, and so I will do what it takes.

And in case this way doesn't keep working, I have to thank my great friends, Michelle and Julie, both of whom are sending me different kinds of seat belt locks and harnesses!  I am the luckiest person on earth when it comes to friends, I truly think.  I am humming some Beatles in my head, getting by with a little help from my friends.  It seems appropriate.  At times when I am just plain overwhelmed, when I can't even think straight from stress, my friends have always helped me get by.

So, I'm preparing for today's drive.  We'll listen to some old time gospel and eat ourselves silly on unsuitable snacks, and we'll get by.

Car Trouble

The half hour car drive to and from Janey's school has usually been a good time for us.  We listen to music,  I talk, Janey sometimes talks, we just relax.  However, the last few days have been awful.

It started after school on Monday.  Janey wanted her shoes off, and took them off, which was fine.  But then she said "I want to snuggle on Mama's bed", one of her most common requests, but one she doesn't usually make in the car, in the middle of traffic.  I said "We will when we get home.  We can't snuggle in the car"  From what I can figure, Janey took that to mean we should get out of the car that second, so we could have our snuggle.  This was at the worst point in my drive, where I am in the middle of 4 lanes, two going the other way and one to the right of me going my way, about to turn into a very complicated intersection of 5 major roads, at which I have to get to the left and then across 4 lanes to get to the far right.  It's taken years to get to the point where I'm not panicked every day about it.  So at this point, Janey wanted her shoes back on.  They are shoes which take two hands to get on.  I was stopped at the light, but I still couldn't do it.  Janey was getting hugely upset, screaming and tossing the shoes.  I made a dumb move and tossed the shoes onto the floor of the passenger's front side, where she couldn't get them.  So she did the obvious counter-move, and took off her seatbelt to try to get them.  I screamed at her to put it back on, knowing she couldn't do that.  I had no way on earth of pulling over where I was, or for a bit.  This is city driving.  Luckily, she listened when I said to sit back in her seat---I had visions of her trying to take control of the wheel.  I pulled over as soon as I could, put her shoes on and her seatbelt on, and thankfully, made it home alive.

Fine.  But yesterday, both going to school and coming home, Janey once again took off her seatbelt.  Yesterday morning, it was because I'd committed the crime of not replaying the song she liked for the 5th time, so she decided to come up front and take care of that herself.  Again, me screaming at her to sit back, waiting until I got to a safe place to pull over, putting back on the seatbelt, blah, blah, blah.  I spent the rest of the ride talking to her dramatically about not taking off our seat belts, with lots of talk of "TERRIBLE car accidents" and "Janey getting EXTRA hurt", which was probably not useful for her but I was in a state.  Coming home, I had her go over with me over and over what we NEVER do in the car, and she faithfully repeated we NEVER take off our seatbelts, and that is TOO DANGEROUS, and all.  And about 5 minutes into the drive, she took it off.  She had the courtesy to be startled and try to put it back on when I yelled, but the damage was done.  Again, look for a safe pulling over spot (of which there are extremely few on our drive), pull over, put it back on, lecture, etc.

Lots of issues come up here.  I have no idea how to deal with this.  Janey doesn't truly care if I yell, she doesn't get punishments, she doesn't care about rewards.  She has next to no impulse control.  She wants what she wants, when she wants it.  And she is getting bigger.  I can see a day coming, hopefully not for a few more years, when it will be too dangerous for me to drive her alone, or anyone to drive her alone, and that will put even more limits on our life.  I am probably projecting too much, but it is scary.  I have no idea how I will deal with a Janey as big as I am.  And in the near term, I have to figure out a way to keep the seat belt on.  I will see if there are locks, although I admit it scares and bothers me a little to think of her locked in a restraint in the car.  Is that safe?  I will continue my ineffective lecturing and taking away of treats and videos, both of which I did the last few nights although I am quite certain Janey made no real connection to the car, although she could recite when I asked what she had done that was naughty.  She can recite anything.   That doesn't mean she gets it, or it will come into any play when she is again faced with the situation.  I'm dreading today's drives.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

Watch this video, and read why

Here's a link to a video made by students at Freddy's school, Boston Latin...

video

And here is the amazing part.  The video was filmed by a girl in Freddy's class he knows, and the boy named Paul in the video is a close friend who is also in Freddy's class.  And Freddy never knew, and the other kids never knew, that they shared something with each other.  Each has a younger sibling with autism.  When Paul describes life with his sister (and yes, he ever has a SISTER with autism, rarer still!), it could be Freddy talking.

The video made me cry.  It made me cry for a couple reasons.  One is the truthfulness of the boys talking.  They are not pretending autism is anything but what it is, but the love they have for their sisters is so very apparent.  They are honest about how hard the crying is, the running away---the same things Freddy knows so well about life with Janey.  It also made me cry because I felt less alone, in a way that's a little complex.  I know there are other families out there with autistic children, and autistic girls, but until seeing the video, I didn't know that Freddy knew others like himself.  He didn't either.  Boys his age don't talk about the challenges of life with an autistic sister on a daily basis. That is normal.  But now Freddy knows, and I know, that someone else, actually quite a few someone else's, that he knows well, gets it.  Gets it by living it.  When Freddy got home and I showed him the video, I was crying very, very hard, and not quite even understanding myself why I was, but I think it's the joy of connection---of knowing that you aren't alone, a feeling you all have given me, and now maybe Freddy can feel too.

Can Janey Read?

Janey's ABA instructor today brought up a topic which is something I wonder about now and then.  Can Janey read?  It seems unlikely.  She doesn't know her letters consistently, at least that she ever lets us know, she doesn't speak in full sentences for the most part, and any testing that has been done on her in terms of IQ or functioning level has put her in the severely intellectually disabled range.  But sometimes, there are tantalizing little hints that she might be able to read, at least some.  

Mr. Ken, the ABA instructor, told me about a program on the iPad Janey was using the other day, one that asked to identify objects both with spoken instructions and words on the screen.  He said the sound was turned down, but Janey was getting the answers right.  As we talked, she jumped on the iPad and went to a program which asked her to pick which of 4 scoops of ice cream was the vanilla scoop, again, without sound, and she picked correctly immediately.  Yesterday, one of her classroom teachers wrote that when they spelled out "C-O-O-K-I-E", Janey understood and said "Do you want a cookie?", meaning, of course, that she wanted a cookie.  And over the past year, we've seen little hints of reading, like Janey knowing the difference between videos that were identical except for the name of the video, like Disney sing-a-longs.

If you read all that, you might be thinking "well, it certainly sounds like she can read at least some.  Why does her mother sound so doubtful?"  I think there's a few reasons.  I am always VERY cautious about thinking Janey can do things that she can't.  I want to be sure before I believe.  That is my nature, I guess.  I'm skeptical.  Also, I know that our minds are primed to remember the good guesses and not the bad ones.  We remember all the times Janey seemed to be reading, and not the times she didn't have a clue what she was seeing.  And Janey is not hugely visual.  I think most of her learning is auditory, which would not make her someone, like a lot of kids with autism, that is cued into written words.  And there's her overall level of functioning.  Reading would be a huge step, like a child who had never sat up suddenly running.

But I know it's possible.  I know reading works in mysterious ways.  I have no idea how I learned to read, at 5.  I didn't learn via phonics.  Suddenly, I knew what the words said.  I still don't know how I read.  I do it automatically, and very, very fast---faster than anyone I know.  Janey might be a look-see reader like me.  She might have skipped steps along the way.  And in some ways, reading might be easier than talking for her.  It leaves out the social step, of having to communicate with another person.  You can read straight into your mind.  That also would make it harder to know for sure if she is reading.  Janey would not be inclined to want to impress us with her skills.  She has no desire to please anyone with what she can do.  If we figure out she can read, it might not actually change much, as I am quite sure she won't do it on command.  After all, she can also talk, but her talking is not really communicative, most of time.

With all that being said, I'd be thrilled if Janey somehow did learn to read.  More than almost anything, I can't imagine life without reading.  I read constantly, and I have since that mysterious day at 5 that I somehow started reading.  Reading is magical.  It's a dream I've had for Janey that I barely could let myself hope for.  And I still don't think it's going to completely come true, but even having it be a distant possibility is wonderful to dream of.

"Good night, Daddy!"

Last night, as I was working on getting Janey to sleep, she jumped up and went out to the kitchen where Tony was.  A very common occurrence, usually because she wants to ask for food of some kind, but not this time.  Tony came over to me a few minutes later and said "Did you tell Janey to come tell me good night?" I said I didn't, and he said "She came out here and came up to me and said 'Good night, Daddy!'"  And that is huge.  She has never, ever, ever done something like that spontaneously before.  She sometimes, once in a while, would say something like that if I specifically asked her to, if I said "Go say good night to Daddy", but on her own?  Never!  To say we were thrilled is an understatement.  It's the kind of thing that Mr. Ken, her ABA specialist, and also everyone at school has been working on for years and years, and last night was the latest example that it's finally catching on.  It's a great example of what I need to work on---faith that in time, whether Janey seems to be showing results or not, she will learn.  It's hard to wait until a child is eight to hear them tell you good night for the first time on their own, but I dare say it's a lot sweeter after that long of a wait!