Assorted Janey Anecdotes

Sometimes the little stories and thoughts involving Janey that I have stored up don't come together into a whole that makes for a good blog entry.  That's been happening lately, so I thought I'd just put them together into an assortment of little tidbits!

#1.  The other day, we were visiting a friend of mine who is in the hospital.  As we waited by the elevator, a doctor walked by.  After he was out of sight, Janey said in a happy tone "A doctor!"  It was a kind of utterance I've rarely heard from her, just an observation, not a request.  I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.

#2.  We went to the Savers thrift shop yesterday, my favorite shopping place.  While Tony looked around, I had Janey with me as I looked at sweaters.  She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling.  A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see.  The daughter is not quite right"  I don't like that look at all, but I'm sure I've used it myself.  She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?"  I am not sure what I would have rather had her do.  I am being petty in my mind, but the whole thing bugged me.

#3.  Tomorrow is Janey's IEP meeting.  Since she is 14 now, she has the option of attending the meeting.  Her teacher is going to bring her to the end of it.  I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening.  It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey.  But we'll see how it goes.

#4.  I put in the high school choice form.  We put first on the list the school I wrote about that I most liked.  You had to put at least 3 schools down.  I put 6, and listed last the school very close to our house.  I don't know if it was really my last choice, but I don't want it assigned to us just because it's close.  I hope Janey gets into our first choice.  I am telling myself I'm ready for a fight if she doesn't, but I hate a fight.  So I'm just going to keep hoping push doesn't come to shove.

#5.  The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off.  We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home.  And Tony and I both were starting to feel panic, even though it was not a panic situation.  There is just something unspeakably scary about the thought of not knowing exactly where Janey is.

#6.  Janey loves to watch Tony play video pinball.  His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock!  You are making me very unhappy!".  Janey's teacher emailed us last week that Janey kept saying those exact lines at school.  The teacher didn't know where they were from.  Tony was very, very happy to think of Janey quoting the game!

#7.  Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man"  He is not a Billy Joel fan.  I loved it, though.  The background music in stores is something Janey always notices. 

#8.  The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked.  I know she can do this, but I've rarely heard it.  I was determined to, and kept asking Janey for her address, over and over.  She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset.  I don't know why I do this.  Partly I guess it's because she talks so little at home, less each year, I'd say.  I want to hear what she can say.  I am not satisfied just knowing she CAN say things.  I want to hear them myself.  I need to stop with that.

#9.  Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed.  Cuddling isn't really cuddling, either.  It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough.  She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't.  It's almost always me who loses the staring contest, who gets restless.  I feel guilty about that.  I wish I knew what she was thinking, why the looking at each other is so important to her.  Eye contact certainly isn't an issue for her.

#10.  Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11.  But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known.  As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything.  Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was.  I think about this a lot.

#11.  I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice.  If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.

Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

Sixteen non-sentimental autism truths

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just Plain Old Awful

Here's a warning for you.  Usually I try to be at least somewhat upbeat in what I write, or at least not totally downbeat, but this post is not going to be that way.  I'm just going to take advantage of anyone reading this to rant a little about the second half of yesterday.

The first half of the day was fairly decent.  Janey went to summertime school, I got some needed housework done while she was there, and took a nice little nap.  I picked her up, and got a fairly halfway okay report (she had bitten herself a few times and freaked out a few times, but had good moments too---an aside here is that I bet for a lot of parents, that would be one of the worse reports of a school day they have ever gotten, but for me it was, well, not great but okay), got her home, managed to give her a shower and wash her hair, which she had not been wanting lately, got some dishes done although the hot water wasn't somehow coming out hot...nothing extremely wrong with that first half of the day.

Then, about an hour after her shower, I was starving.  I hadn't eaten lunch yet, and it was about 3.  Janey was on the couch playing with her iPad and pretty happy, so I went into the next room and quickly microwaved a frozen meal.  I was heading out to eat it near her to keep an eye on her.  She was walking toward me, and as often is the case, it took me a minute to register that her hands were completely covered with something like chocolate, that isn't chocolate, that is much worse than chocolate.  I looked at the couch, and realized it was covered with said substance, the floor was scattered with it, and the iPad was complete fingerpainted with it.  This kind of situation is truly a 2 or 3 person job, but there was only me in the house.  I followed the routine I've worked out---grab her first, head to the bathroom, clean her up (which is easier said than done, and I'll spare you the details), go back to the scene of the crime, make her sit on the other couch and tell her in extremely firm tones to STAY THERE, and start the fun cleaning up.  It took a long time.  Thank goodness I had the foresight to buy the best iPad protector cover I could find.  It's saved the poor iPad about 5 times now.  Removing the cover and cleaning it was the last step in the ever-entertaining sequence.  Needless to say, by that point my food was cold and I wasn't hungry any more anyway.

So, flash forward a bit.  We need to pick up Freddy at his summer job, which is about a 45 minute drive away.  Tony was home by then, and I decided Janey and I would ride along with him, as my exciting outing out of the house for the day.  Janey usually enjoys a car ride, and the first leg of this one wasn't bad---she screamed the first half, but then calmed down (and I again had the thought---for many people, that first part of the car ride would have been the worse car ride of their life, but I've developed pretty low standards for what is okay)  We picked up Freddy, and then we were idiots.  We were all starving (I still hadn't eaten) and right next to his work is an Old Country Buffet---the one restaurant we sometimes attempt with Janey.  We decided to go.  Well, this was an OCB we hadn't been to before, and I swear it was the most happening place I've ever been in my life.  Picture a huge room completely filled with families, millions of little kids, long cafeteria style tables, balloons and cotton candy and excitment all over.  I guess they have some kind of special summer night deal for kids, and boy, did the local crowd take advantage of it.  It was a loud and rocking place.  So did we do the sensible thing and realize it just wouldn't work for Janey?  No, we did not.  We went on in to eat.  You can pretty much write the rest yourself.  It might have been okay, if there had been any french fries, but for some reason, there wasn't.  That set Janey off.  She started to scream.  And the whole place, apparently eager for some dinner entertainment, stared at her.  Adults, kids, waitstaff, the whole crew.  They all stared.  I am not overstating this.  I was in the center of a huge room of staring, judging eyes.   We stayed as cool as we could.  I led a screaming Janey up to the buffet, found her some chips and salsa, and got her back to the table.  For a little while, she ate some salsa and was a bit okay, but when she started to scream again, I gave up and took her out of the car, after having stuffed in a few bites of I don't even remember what.  Tony and Freddy ate for a bit more, and then we were off for the ride home.

The ride home---oh, yes.  It was hell.  Janey screamed the whole way, with intensity.  We were trying to hear about Freddy's day, to regroup after the dinner, to just get home, and she screamed.  And bit herself.  And at one point, bit Freddy, although he managed to not get much hurt.  And flung herself around.  I tried my damnest to talk to her in calming tones, to sing to her, to do whatever you can do in a car to comfort a child who is completely totally freaked out.  It was one of the worst 45 minutes I've ever had.  I was never happier to get home, and Janey had worn herself out to the extent she collapsed and slept.

Normally I'd try now to sum this up and put some kind of spin on it, to figure out what I'd done wrong, to see the day from Janey's perspective, to learn from it, to not just be completely negative.  But for just this once, I'm not going to.  I'm just going to close here, with all I can really think of to think---I hope today is better.

Mean people and kind people

This morning, on the way to school, Janey and I stopped at the grocery store.  She needed more juice boxes for school, where they keep a cupboard of snacks for her, as her eating is odd and often doesn't fit nicely into school lunch or packed lunch categories.  Janey has been tough lately.  She's making big strides with understanding and with doing things for herself, but as often is the case with her, those strides come with a period of strife.  She had already freaked out in the car several times, but I really had to do the store---I wasn't going to send her off to school without the tools they need to get her through the day.  That isn't fair for me to do.  So I hoped for the best and went into the store.

At first, things were okay.  Janey stayed with me, was cooperative and it seemed to be going well.  It was just a quick shop, and I had hopes of getting out of there without problems.  But then I made a huge error.  I stopped at the magazine rack.  I was hoping to pick up a crocheting magazine---my latest passion.  But I didn't follow the rules of shopping with autistic kids.  I lingered there for longer than the allowed 30 seconds. I must have looked for that magazine for a full 90 seconds, or maybe a second or two more.  I didn't find it, and the damage was done.  Janey wrenched out of my hand and ran down the aisle screaming.  I caught up to her, but not before she had grabbed some crayons and opened them in anger.  I tossed the crayons in the cart to buy---not for her, but because I couldn't leave them open on the shelf.  She continued to freak out the whole time we were checking out---loud screaming, biting sleeves, a little head banging, general hysteria.  We only had about 15 items, but it still felt like a long time standing there.

The woman behind me in line, when I caught her eye, smiled at me in a wonderful way.  She then said "I hope both of you have a better day soon!"  I wanted to hug her.  It was exactly the kind of response that is so, so wonderful to get---a kind smile, a nice word.  Then we walked toward the door, and a woman that had been in the next aisle stared me down as we both approached the door.  She muttered something under her breath that I won't repeat here, but it was far from pleasant.  It used some swear words in relation to Janey.  I felt like she had kicked me.  I just as quickly as I could got to the car, unloaded it, and had a few minutes sitting inside crying.

I don't understand what drives people to act like that.  Did she honestly feel I had just brought a brat into the store to ruin her day?  I know it's not fun to be around someone who is melting down.  I know that better than most.  But short of keeping Janey home at all times, I can't prevent the public from occasionally having to be present for one of her meltdowns.  I just can't.  And I'm sorry if they upset people.  I truly am.  I've become a little stronger over the years in dealing with stares and disapproval, but I have to say it's still incredibly hard for me to soldier through a time like today.  Which is kind of the point I'd like to make to that nasty lady---I very much don't need you pointing out to me how Janey was behaving or how it bothered you.  I'm plently aware of it.

But I'll end positively.  The sweet, sweet woman that was so helpful with her words and attitude---there are a lot of people like that.  And I hope they know how much a simple kind word can do.  I hope I have a chance in life to pay it forward and be like her as often as possible, because I have learned what a huge difference that kind of kindness can make in someone's life.

If you didn't know autism existed, what would it look like?

Yesterday morning, Janey and I stopped at the Rite Aid on the way to school.  Janey needed Cheez-Its, her preferred school snack, so we did a quick before school shop.  The cashier was a teenager who was friendly but seemed, to be frank, a little clueless.  Janey was in her silent mode---very quiet, very slow-moving, like she was walking through sand or something.  The cashier very much wanted to connect with her.  We were getting a heavily discounted chocolate bunny, so she asked Janey "Is that bunny for you?"  Janey of course did not answer at all.  The cashier said "Oh, she's tired!  She looks very tired.  Aren't you tired?"  Normally at this point I'd explain Janey was autistic, but I was tired, even if Janey wasn't really, so I just said nothing.  The cashier wasn't one to give up, though.  She asked Janey "How old are you? Where do you go to school?"  Janey---well, you know---stony silence.  The cashier said "Oh, she's shy!  She's very shy!"  I just smiled and tried to get done with paying.  Then the cashier said "Can you say goodbye to me, sweetie?"  Janey did talk then, but not to say goodbye.  She said in a run-together way, as she talks when she's in the slow mode "openthebunnyyesorno", meaning "Can you open the chocolate bunny right now, YES or NO?"  I said "We'll open it in the car"  The cashier said "Oh, does she get speech therapy?  I used to get that too!  It's okay, sweetie, you can talk to me!"  Janey---no answer.  Finally, as we were walking out, the cashier said "You'll be happier when you get to school and see your friends, won't you?  Have a good day!"

I didn't mind the whole interchange.  It was friendly and much better than staring, or ignoring.  But it got me thinking.  It's a big question in autism----if there ISN'T an autistic epidemic, where were all the autistic kids in the past?  I'm not weighing in on the epidemic or not question---I don't know enough to say.  But I do know that if you don't know what autism is, which in the past, many people did not, you'd approach it like the cashier.  You'd assign it to a category you do understand---tired, shy, in need of speech therapy---and then if those didn't work, most likely, in the past, you'd call it retardation.  To use today's correct term, you'd call it intellectual disability.

We have a whole day now called Autism Awareness Day.  And it's working---most people are aware of autism.  30 or 40 years ago, most people weren't.  But I do think there were plenty of autistic kids then, and kids with Aspergers, and kids with everything in between.  I remember some of them, now, looking back.  My parents do too.  Mostly we remember kids with high functioning autism, because kids like Janey probably weren't too visible.  They were in institutions, or they were kept home, because they weren't welcome in schools.  Even in the small town I grew up in, I was only vaguely aware of a few children that went to the special school in Rockland (strangely enough, called the Henderson School, the same name as Janey's school, although not named for the same person)  They were not much part of the community.

Autism doesn't always show itself clearly.  The Janey the cashier saw yesterday very well could have been a shy child, a tired child.  It's something to keep in mind when trying to figure out this whole autism mystery.

Janey Awareness, Autism Awareness

Today is International Autism Awareness Day.  I've said in the past I think I'm about as aware of autism as a person can be, but that's not really true.  I am aware of the way autism affects one little girl, and one family.  Autism is a huge spectrum.  There's the saying that has gotten to be a little cliched, but it's true---if you know one kid with autism, you know one kid with autism.  I had been thinking of writing in general about autism and what I'd like the public to be aware of, but I realized I'm not the expert in that.  I'm the expert on only one child with autism.  So here it is, my "Janey Awareness List"

1.  Janey is eight years old.  She's my third child, my first girl, the girl my husband Tony and I longed for.  She was born on her brother Freddy's seventh birthday.  Although she had some quirkiness from birth, she appeared to be basically normally developing until a bit before her third birthday, when she regressed severely.  She was diagnosed at age 3 years, 3 months with autism.

2.  Janey has low functioning autism.  She, like many children with autism, is intellectually disabled.  Although her skills are a little scattered, in general, she functions like a child of about 2.  She speaks, but around 98% of what she says is either simple requests ("I want Kipper, I want green candy, I want snuggle on Mama's bed") or echolalia, delayed or direct (repeated phrases from videos, books, past conversations, etc)  She says very little that is original or communicative beyond requesting.  She knows some letters and some numbers, inconsistently, some shapes, she can sometimes write a J and is working on the rest of her name, she can name single objects she knows when she's in the mood.  Learning this much academically has taken her 6 years of school (preschool through second grade, where she is now)

3.  Our lives are hugely, extremely impacted by Janey.  She literally cannot ever be unsupervised, not for even seconds.  She has the impulsive nature and lack of safety concerns of your typical 2 years old, in a fairly tall 8 year old's body, and she's pretty good with physical things like climbing and opening.  Someone must always be assigned to watching Janey, ALWAYS.  That means even if you have to leave the room for a very short time, like to run to the bathroom or check the mail.  Otherwise, Janey will put herself in dangerous situations or do things like pour liquids on the floor, or worse.

4.  Because of Janey's lack of ability to communicate and her swings in emotion, she can become very, very upset for long periods of time.  We have had stretches of days on end where Janey cried without stopping, all day, crying really being a mild word for what she did---more like screaming hysterically.  There are other days she laughs for hours on end, and wakes manically in the night still laughing.

5.  Janey attends an inclusion school, the William W. Henderson Inclusion School.  She is in a classroom with kids that are typically developing and with a few other kids with various special needs.  There are 2 teachers and an aide in the classroom, and Janey is also supported by a lot of specialists like physical therapists, occupational therapists, speech therapists, music therapists, an ABA specialist---it takes a full staff to education a Janey!  We love Janey's school, and are very lucky she is there.

6.  We don't know what caused Janey's autism, although I have plenty of theories.  I don't really believe in autism cures.  I don't have a fixed autism policy, belief or style.  I believe in doing a hodgepodge of whatever works.  Janey is on no special diets, takes no special vitamins.  I am not saying that those diets or supplements might not work for other kids, but we haven't chosen to go that route.

7.  Janey loves music.  She knows hundreds of songs by heart, and if the spirit moves her, she can sing them in tunes with the full lyrics, but not on command!  Listening to music with Janey is my favorite way to bond with her.  We listen to a huge variety of songs on the iPod in the car, and when Janey likes one, she asks to re-hear it, and I add it to her list, which she knows how to access when I put the iPod on a base at home.  She especially likes country gospel music (although our family is not very religious!), bluegrass, Weird Al, and most of all, Christmas music.  She sometimes is intensely bothered by certain songs, and it could be those are sung out of tune---I'm not really musical enough to know!

8.  One of the hardest parts of autism for me is the stares in public.  If I could make the general, autism-unaware public aware of one thing, it would be how hard the stares are.  If you see a child acting unusually, maybe making odd sounds or jumping up and down or crying when there doesn't seem to be a reason, or just acting much younger than they are, please try hard not to stare!  I never mind people making eye contact with me and smiling, just to let me know they see us and are supportive, but please don't just look at us like we are a sideshow!

9.  If you are interested in helping autistic kids and their families, my personal wish would be that you volunteer or give money or whatever to organizations providing direct support, direct services.  That means people that are working directly with autistic kids---giving the parents a break, giving the children opportunities for recreation, providing afterschool programs, camps, parties, things like that.  Just because an organization has "autism" in its name, that doesn't mean they work directly to help kids with autism who are living here and now.  They might support one very specific type of autism therapy they believe in, or they might give money for research.  I'm not knocking those things, but there are many families out there desperate for help RIGHT NOW.  They already have the kids with autism, and knowing what caused it or working for some long term "cure" is not going to get them through the day.  I speak from experience.  I am very lucky that Janey can attend afterschool and summer school.  I'm not sure how I'd survive otherwise, frankly.  Even with that, vacations and weekends can be brutal.  I'd do anything in the world for Janey, but there are times that her needs overwhelm our family.  I worry about families with single parents, or more than one autistic child, or less school time.  I worry about them very much.

10.  Janey is an amazing person.  I love her very, very much.  That being said, life with autism is tough.  It's tough for her, it's tough for our family.  Those are the two big points I'd like to emphasize in the end, I guess----that children with autism are people, beloved family members, children that are as precious to their families as any child, but that doesn't change the fact that raising an autistic child is extremely, overwhelmingly, unbelievably tough.  Or, to get back to my Janey-centered approach, I love Janey more than I could have ever imagined, and she is tougher than I ever imagined a child could be.

I'll end with a shout out to every family out there raising their own autistic child.  Here's to all of you.  I'm raising a toast in your honor.  Cheers, and my love.

Autism in public places

This article  ( link ) is getting a lot of buzz today.  It talks about a huge issue in autism---how do we balance our childrens' rights to be out in public with the rights of those they might be somehow disturbing?

My feeling is that common courtesy on both sides goes a long way.  I would not take Janey to a quiet restaurant or movie, because she would not be quiet.  If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise.  That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants.  However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.

I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely.  One was on a commuter rail  ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ).  Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.

However, there are many, many times Janey has been treated with kindness and understanding.  As she gets older, people are more able to see she is different, and they see that we are all trying hard.  Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost.  She usually gets a lollipop at the register, and she gets a lot of smiles.

Most of the world, though, is in-between.  There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point.  Nothing in this world makes me more uneasy than being the center of attention or being singled out.  But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises.  She cries sometimes.  She jumps around.  She talks oddly and repeats phrases.  If that bothers people, then I do have a problem with that.  None of those actions of hers hurts others.  None of them are illegal, or keep others from doing what they need to do.  I am not going to hide her because she might make someone uncomfortable.

The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation.  It told of a man with autism that would eat food right out of the hot food bar at Whole Foods.  That is a health and safety issue, and a rudeness issue.  If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave.  I don't expect exceptions to the rules for Janey.  She needs to learn what she CAN learn, so that she CAN be out in public.  But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.

In a perfect world, everyone would be striving to be as kind and fair and understanding as they could.  That's not this world.  I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others.  It's not easy, but then again, not much about this autism parenting gig is.

A room full of strangers

William had an overnight at a college that will remain nameless on Friday night, a program for admitted students and an interview for a great scholarship.  We drove up to pick him up on Saturday.  Usually, in a situation like that, Tony would go and I'd stay home with Janey.  It's just easier.  It's impossible to know how she'll react to new situations, and we like times like that to focus on the boys, not on her.  But I've been feeling left out of the college process, and I really wanted to see the college and to get out of the house a little.  So we took Janey with us.

Overall, it went well.  She enjoyed the ride, until the end (she seems to have a 90 minute per day limit on car rides---as soon as you pass that, she freaks out), she loved walking around the campus and she especially seemed to like the big room in the admissions office where we waited for William to be ready to go home.  It was a spacious room, with big chairs and with lots of windows, and for a long time, she just sat there in delight.  She was smiling her huge smile, and to my eyes, not being very noticable.  But still, we got stares.  I tried to tell myself that is was because she was 8, at a college, and beautiful.  But there were other young kids there, and they were not getting stares.  No, it was because at this point, she just looks different.  She doesn't act as you expect a child her age to act, even when she is not making a sound.  And then, occasionally, she makes her happy sound---the long "AHHHHHH" sound.  We barely notice that sound, but other people do.  I sat there trying to feel like an anthropologist, just observing the stares.  They weren't especially friendly stares.  They were pretty confused looking, or at times, a little annoyed.  This was a big day for a lot of these parents---their special high school seniors going to a big college event.  It was not a place they expected to see a little autistic girl.  It wasn't like there was any speech or event she was interrupting---it was just a waiting room.  But still, she wasn't part of their expected background.  At one point, she got very excited and jumped up and ran toward the door.  We did our usual thing---the very firmly and loudly spoken "STOP!" and ran after her.  That got the whole room looking.

So---what is the take-home message here?  I don't know.  I'm not going to keep Janey out of the public eye.  This was not a case where she was truly interfering with or disturbing anyone.  And my attitude I should have is---who cares?  Let them stare!  And I am usually fairly okay with that.  But somehow it bothered me more yesterday.  It felt like I couldn't do a normal rite of passage---visit a college my son was interested in.  Of course those starers were not stopping me, but their looks said a lot.  One woman especially, at the desk, just did not take her eyes off Janey.  At one point, she was going around the room talking to parents, and giving them little bracelet flash drives.  She avoided us.  She walked right past us.  That got my dander up a little.  Finally, I'd had enough of being in there, and took Janey to the car.  She was at the door.  I got passive-aggressive and said "What are those?" as she was holding a bunch of the bracelets.  She said "They are flash drives.  For ADMITTED STUDENTS"  Well, she'd been giving them to a lot of parents.  But I guess she assumed if we had a child like Janey, we certainly wouldn't have any child up for their big special scholarship.  Which we do.  Which I wanted to point out to her, but I didn't.

I guess I want to say---we are out there---those families with a special needs child.  We are everywhere.  Get used to us.  We aren't trying to interfere with your lives.  We are exquisitely sensitive to any situation where we might be disturbing you.  But you might still have to see us---in waiting rooms, in stores, at parks.  We aren't going to hide our kids away.  We don't bite.  Give us a friendly smile.  Talk to us.  You might find out our kids are pretty darn interesting and cool people.

Here's a picture of Janey enjoying the campus, just because..;.

CVS Hell

Janey is happy right now, watching TV and cheerful.  Which is amazing, considering our ride home from afterschool today.  The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon.  I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out.  She was crying hysterically all the way to the car.  I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home.  She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help.  She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone.  I was just barely able to drive.  She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident.  I made a decision---we would stop at the CVS for the chips she wanted.

I tried to use it as a bribe.  I told Janey "They don't allow loud screaming at the CVS.  You need to take a deep breath and calm down if you want to get chips"  She tried.  She really tried, but there was just no calming down.  She was too far gone.  I drove into the CVS parking lot and sat there a minute, trying to decide what to do.  Janey would cause a scene.  There was no avoiding it.  I hate being in a scene, hate being the center of attention.  But I needed to get home.  I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers.  So I took the deep breath instead and took her into the store.

It was as much hell as I thought it would be.  Janey was screaming the unearthly scream the whole time.  To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes!  Dust to Dust!"  I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows?  It added just the little touch of seeming possessed that made the whole thing that much more fun.  Every eye on the crowded store was on us.

I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm.  I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you.  You are being a good girl.  Let's get the chips.  Let's get in line.  I am right here with you"  I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too.  I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck.  The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed.  When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!"  Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady.  I handed her cash and got out of there.

In the car, as I expected, Janey ate the chips and I made it home.  She had a few more crying spells, but overall, she's over it.

Now, did I do the right thing?  I don't know.  To an outsider, it might look like I was giving in to Janey.  But I don't think I was.  She was upset, but not really about the chips.  The chips were just a part of the routine that wasn't met, and a tool to calm her down.  I needed to get home safely, and that wasn't going to happen unless I did something, so I did.

I can understand why people stare at Janey when she is acting the way she does.  I can't really blame them.  But I wish they would just catch my eye and smile, or at least not be quite so open with the staring.  I would think they would realize that I don't enjoy going in the store and disturbing their evenings.  I'd rather, quite frankly, do almost anything else on earth.  But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community.  Figuring out how to make that work is not easy sometimes.

Life without a handbook

I'm a believer in handbooks. I like to read what others advice. I am not one to jump into new things without studying them first. A trip for which I'm prepared is much more enjoyable to me than one I just happen into. So when I had kids, I read everything I could get my hands on about pregnancy, childbirth and then raising them.

It was not long at all into my first pregnancy that the books began to fail me. Although I was reading over and over how very rare pregnancy complications are, my body and my doctors were telling me otherwise. I read about the importance of exercise during pregnancy. My doctors told me at first to stay off my feet as much as possible, and then to stay in bed all the time. When William was born two months prematurely, it again threw off every book. I tried adding two months to every landmark he was supposed to meet, and still, he seemed stubbornly unable to stay between the navigational beacons. He sat and walked far later than he was supposed to, and he started saying words far, far before he was supposed to. I brushed off his clear "Daddy" when he said it at 8 months, which was 6 months corrected, until I realized he said it whenever the phone rang, as it was usually Tony calling. He just kept adding words from there, and not sitting up, and never liking the foods he was supposed to, and generally doing everything with total disregard for any guidelines.

But still---I read the books, although I was starting to suspect they didn't know all they thought they did. Freddy barely talked at 2 years. But somehow, I knew he was going to talk just fine when he was ready. I didn't worry, and I like to worry beyond almost anyone. Now, I doubt there are many people on earth as good at talking as my Fred. He's thinking of a career as an announcer, and has already gotten some offers along that line.

And then Janey. By that point, I had pretty much realized that either the handbooks didn't know much, or I just had a knack for raising kids who liked to confound me.

However, with the last few incidents of store-crying, I decided there must be something out there that could help me. I went two different routes. I looked up store tantrum advice for toddlers, and I looked for store crying advice for autistic kids.

Well, you can guess what I have to say about that. The central theme of everything I saw was explaining to your children. Evidently, if I told Janey what to expect in the store, stayed calm when she freaked out, and offered her a treat if she could keep her cool, she'd be just fine. There's a few problems with that. Janey probably understands more than we think, but she in no way understands enough to have a store experience explained to her. And the places she has freaked out are not new places, they are places she's been other times without an issue. She is not patient. She can't wait ten seconds when she wants something without breaking down. I can just picture how it would go over if I told her "don't cry or tantrum for the half hour we are in this store, and I will get you chips" She'd hear one word clearly---chips. And want them that second. And cry all the harder without them. As for me staying calm---I try very hard to do that. I might be able to, if I am in a store absolutely alone. But with every single eye staring at me, and some people feeling they must offer advice or show their disgust---well, I'd like to see anyone stay calm.

The autism-specific advice all tended toward kids with much more verbal ability and level of understanding than Janey. I can understand that. If I felt like writing some autism advice, it would be a lot easier to write it for higher functioning kids. I'm starting to suspect the truth. There is no advice that really works consistently when dealing with lower functioning kids with autism. There are stop-gap measures, like hugging her or giving her food instantly, and there are very long term measures, like having her learn more language through school and ABA. But the middle-term measures that would get us through a store trip, or a middle of the night scream---they don't exist.

And so I'm left living without a handbook. Sometimes I think I'd like to try to write one, but then I realize anything that might work for Janey might not work for any other kid "like" Janey. I put like in quotations as there is no other kid like Janey. That is true for all kids, but like how Orwell said some animals are more equal than others, some kids are more unique than others. If you are a fellow member of the club of parents of low-functioning autistic kids, you can wear that as a badge of pride. You've got yourself a kid that you are the expert on. No-one else really gets it. Whatever you are doing for your kid is most likely better already than any expert could teach you. It's taken me a lot of years of parenting to accept that I'm the expert on my own kids.

Shopping Hell

Janey has had a tough last few days, including her birthday. There's been periods of time each of the days where she has been crying non-stop, like in the bad old days. I mean completely non-stop hysterical crying, for hours and hours and hours. There are have been periods each day where she was fairly happy, but the crying has been big parts of the days, and it's been awful. She doesn't like to feel that way, and I know she doesn't know why she is crying. She does pathetically sad things to try to comfort herself, like telling herself to take a deep breath, or humming lullabies to herself. It breaks my heart. Today Tony took William to visit colleges, and I decided to do absolutely nothing but try to keep Janey happy and active, and to do whatever she wanted, sort of a second birthday that was just hers (she shares her real one with Freddy). It worked pretty much until 3pm, which has become the Hour of Evil where she starts to lose it every day. I took her to the splash park in the morning, to McDonalds for lunch, we snuggled a lot, I played with her, watched Yo Gabba Gabba with her a lot---and I was hoping it would all break the crying trend. I took her at 3 to Sears to ride the escalator there, the closest one to us. She had been asking and asking for that. Something about the store set her off badly. At the top of the escalator, she started screaming, crying so loudly that literally the whole big store was looking at us. I grabbed a dress I had been wanting to get her, on a huge sale, and ran to the register. Dumb move. As we waited less than 2 minutes for a cashier (you get quick service with a screamer, they opened a new register), the woman behind me in line felt the need to tell me that Janey needed to go home, and then started loudly saying "SHHHH" to her. I felt like punching her, or at least explaining to her we had been in the store literally 3 minutes at that point. But concentrated on just getting out. Then the cashier felt the need to roll her eyes to another cashier and sigh loudly as she waited on us. At that point, I lost it. I am not a yeller. I do anything to avoid seeming rude or being confrontational. But I couldn't stop myself. When I am REALLY upset, something takes over. I said in a very loud voice (maybe yelling) to the cashier "She is autistic. I am shopping as quickly as humanly possible. She needs school clothes just like anyone else, and I do not have any babysitters. Therefore, I must bring her with me. I'm sorry she is bothering you" The cashier, taken aback I am sure, said nothing but a sarcastic "Have a nice day!" as we left, with the eyes of every person in the store on us. If you know me in person, you know this was my nightmare. Literally, one of the worst moments of my life. And you know that when I got to the car, I started doubting myself. Why did I take Janey to the store? Why did I try to buy anything? And then, still mad, I started answering myself. What else am I supposed to do? What I said to the lady was true. Should I just keep Janey at home at all times, to avoid bothering anyone? Isn't that what people used to want people with kids in wheelchairs or kids with Down Syndrome to do? Why doesn't Janey have a right to be in public? Of course her crying is tough. But you would think that people would realize I am doing everything I can to minimize their exposure to it. That sometimes, I have to try anything, and I thought the escalator shopping might work. That there are many kinds of people in this world, and although Janey is loud when she is crying, she isn't a spoiled brat or a mean kid. She is autistic.

Well....that was a long rant. Obviously I'm tired and upset. I know these weeks without school are tough for Janey as well as me. In fact, the day before her birthday, when I asked her to guess what the next day was, trying to hype her up, she said "A school day?" very hopefully. So we will make it through, someone. But I won't forget today anytime soon.

Tough Days

The last few days with Janey have been very, very tough. The crying is back. She screamed huge parts of yesterday and today, with this night being the worst. She cried solidly for at least 3 hours. It's almost unbearable to hear and see, and I am very sure it's almost unbearable to be her when this is going on. We have no clues what's up. I don't think she's sick, nothing really happened out of the routine---she wouldn't know it's vacation yet, unless she somehow understood the talk of it, which I doubt, we did the things with her she usually like---but still, just incredible amounts of crying. I don't do well with it. I just want to make her happy, to make it stop, and if the boys ever cried past babyhood, I'd talk with them for hours if it took that, cuddle them, work it out somehow. But I can't do that with Janey. She generally doesn't want comforting, she can't tell us what she wants (although she does obsessively ask for Kipper or Care Bears or milk when she is upset, but she doesn't really want those), she has no real coping skills when whatever it is upsets her.

I feel for the boys. Her crying is so often the background noise of their life. Tonight, as we were trying to get her to sleep, William wanted to play guitar and Freddy wanted to play on-line video games. They were both in their rooms, but our house is small and it wasn't working---it was waking her up. I had to ask them both to stop. Last night, we made a feeble attempt at a family night out---we tried to drive to Dedham and get some Five Guys Burgers or Chipolte. No go. Janey screamed hysterically as we tried to go in. So I sat in the car with her and with Freddy, neither of us able to make her happy, while Tony and William grabbed something fast. A car was in the lot facing ours, with a woman in it who glared at me the whole time they were in there. She probably thought I'd done something to make Janey cry, or thought we were crazy parents for dragging out a crying child, or maybe she thought I wasn't being strict enough. Who knows what she thought, but for someone like me, who hates that kind of standing out and attention, it was torture. I kept wanting to go over to her car and scream "She's autistic! Would you like to try to do a better job with her? You are MORE THAN WELCOME to try!"

Now she's asleep, and my headache is finally fading. I hope this storm is over. For now.