Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Janey in Lists

Things Janey loves to eat

Juice from the pickle jar
Spaghetti sauce
Boiled greens
Cheddar cheese---must be freshly cut from a big block
Cherry tomatoes
Onions with the skin on

Movies Janey likes

Home
The Spongebob Movie
Coco
The Little Mermaid 2
Hercules
Care Bears---Journey to Joke-a-Lot

Janey's biggest talents

Remembering tunes and lyrics of songs
Smiling in a way that lights up a room
Her sense of humor
Her beauty inside and out
The special way she has of uniquely connecting to each person she loves

The most frustrating things about Janey

When she screams and we can't figure out why
That she isn't fully toilet trained
When she bites her arm
How upset she gets when one time out of a hundred, we insist on watching our own TV shows
Her utter lack of patience

Janey's favorite things to do

Car rides
Showers
Dancing
Snuggling
Eating
Rearranging furniture
Rearranging cats

The toughest parts of being Janey's parent

The need to absolutely constantly be on alert
The tiredness when she doesn't sleep
Cleaning up difficult messes
The very loud screaming
Over ten years of the same TV shows

The best parts of life with Janey

Seeing her happy
How often she makes us laugh with her
The many, many times she surprises us with what she says and does
The wonderful people I've met that I wouldn't know if I didn't have her
How she brings our family together

Janey's favorite music

The Beatles
Toby Keith
Christmas music
Black Sabbath
Meat Loaf
Weird Al
The Ventures
Nursery rhymes
Show tunes

Janey's most said phrases

"Snuggle on Mama's bed?"
"Want to take a shower?"
"Go for a car ride?"
"Want to go away?"
"Go to the ice cream store?"

Things Janey hates

Hair brushing
Coming home after a car ride
People saying "just a minute!"
Cats that keep coming back after they are rearranged
Being out of cheese

Things I think Janey could do if I could figure out how to unlock the keys

Read
Use remotes
Access much of her vocabulary
Consistently use the bathroom
Sleep on a regular schedule

My biggest fears regarding Janey

That someone will hurt her when I'm not there to protect her
That she get sick and not be able to tell me what is wrong
That she will somehow get lost
That when I someday die, she won't understand why I left her
That when I am gone, she will not be taken care of

Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

Four phrases that work lately!

It would seem to stand to reason that when we find something that works well with Janey, we'd use it over and over---that we would remember it.  But that's one of the tough things about autism in reality versus autism in theory.  In the middle of tantrums, screaming, lashing out, hours of crying, we tend to forget what has worked in the past, or if we remember, are just too burnt out to break old ways of doing things and insert the new ways.  As a way of reminding myself,  and to see if anyone else finds these useful, here's four phrases that have worked well lately.....

"Great job!"

Praise in general has almost been a breakthrough lately.  I don't think I ever realized how much Janey needs praise, and I would have said I praised her plenty.  But lately, I have just been laying the praise on extremely thickly, and it is amazingly motivating to her!  I'll find the smallest thing to praise, and will lavishly tell her what a great job she's done, give her high fives, thumbs up, A-Okay, the whole bit.  From putting her clothes in the hamper to not freaking out when we say no to asking nicely to take a ride---we can usually find something to praise.  I think Janey is partly just happy when we are happy, and if we are praising her, we use a happy and upbeat voice.  I've always heard you should praise kids at least 10 times more often than you criticize them, and with Janey, the 10 almost needs to be multiplied by 10---100 praises a day!


"Here's the plan for today"

This is something I really need to say every single morning.  I forget often that Janey wakes up unsure what the day will bring.  School is sometimes five days a week, sometimes four, sometimes not at all.  Daddy is home sometimes, not home sometimes, and William and Freddy are the same.  We might be going in the car a lot some days, and not at all other days.  When you really don't understand the patterns, I'm sure it's scary.  This morning, Janey woke up much earlier than she has been.  Usually, she's been waking up just a little before the bus comes for summer school, but today, there was a lot of spare morning time, and I could see her getting more and more nervous.  Finally, I remembered, and said "Here's the plan for today.  It's a school day.  The bus will come and take you to school.  Then you will come home, and then Daddy and William and Freddy will come home.  Daddy will take you for a ride in the car."  Almost instantly, Janey relaxed.  For some kids, visual calendars work, but for Janey, who I am realizing is a very good listener, just running down the day like that works best.


"Let me know when you decide"

There are times it feels like I spend half my life giving Janey choices.  She'll say "Want to watch Angelina!" and she always, always has a specific show in mind, but never is able to quite tell me which one.  I'll go through all the episodes, she'll not give me much of a hint what she wants, I'll put on the wrong one, she'll scream---it's not fun.  Or she'll open the fridge, wanting something to eat, and not finding it, and I'll go through everything I can think of to offer her.  What has worked lately, though, is to just say something like "I know you are hungry, but you're not telling me what you want.  Let me know when you decide" and then walking away.  Sometimes, that works in that Janey comes over and finds a way to tell me what she wants, but other times, it just works to break the cycle---Janey picks something on her own, or changes her mind and asks for something else more specific.  It seems like she likes having the ball in her court, and it's certainly more relaxing for me.



"I'll be so proud when you calm down!"

This is the phrase that's blown my mind lately a few times with effectiveness!  Janey has been screaming, lashing out, having a fit, and I have stepped back and said "I'll be so proud when you calm down!"  It's the kind of thing that if someone had suggested it to me, I'd have said (mentally) "Yeah, right.  THAT will work"  But it does, a lot of times.  I think it gives Janey a moment to back down and a simple goal to work on.  The SECOND she shows signs of calming, I give her a huge hug and tell her how proud I am.  Sometimes, she stays calm, and sometimes, I have to do it a few times, but even if it only works partially, I think it's a good exercise, because ultimately, the only way to really help Janey not lash out and scream is to have her figure out how to calm herself, on her own.  This way, I'm not telling her how to calm down, I'm just giving her a chance to do so.


Now, of course, lots of times none of these work.  And Janey has been in a good mood for a few weeks, so they might not work at all when her mood changes.  But while I am feeling like there are a few things that actually do work, I wanted to get them down on paper (or on computer, actually).  And here's a picture of Janey this morning, just after me being proud she calmed down!

Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.

Ten Turning Point Posts

This morning, I was doing a little reading back of my posts, something I do now and then.  My first impression---"Wow, that woman sure does like to write a lot!"  Yes, there are over 700 posts.  That's over the course of seven years, but it's still a heck of a lot of writing.  Another thought was about the early years.  For the first few years, I was using the blog mostly as a diary.  The posts are far more dashed off and, in my own worst critic mode, poorly written.  I don't think it ever occurred to me that anyone would be reading them, and at first, nobody was.  Now, I do get a fair amount of readers, which still amazes me every time I think of it.

It struck me that most people probably don't have the time or desire to read through 726 posts to get the story of Janey's life so far.  I decided to pick out 10 posts---posts about what I would call turning points in our journey with Janey.  They aren't my 10 favorite posts, or most popular posts, but they are ones that write about moments I think back on as instances that changed something in our life with Janey.  Here they are, in order of oldest to newest...

The Bad McDonalds Trip

Up until the day of this trip, I felt able to take Janey most anyplace I felt like.  She might have tough moments, but they weren't such that it made a scene or made me feel I couldn't handle her in public.  I remember this trip to McDonalds vividly as the day I realized everything had changed, and I would be no longer ever just jumping in the car with her to go wherever I felt like.

The First Wonderful Music Moment

This might not really have been the first, but it's the first that stands out in my mind as a time that Janey completely surprised and delighted me by making me realize she could communicate things in musical lyrics and melodies she could not do in other ways.

The First Medication 

This was, after an extremely tough stretch, when we gave in and first put Janey on medication.

Deciding Where I Stood

I think this was the first post where I felt I had earned the right to decide for myself where I stood on how I was approaching Janey's autism.  Up until then, I didn't feel I'd earned my stripes enough to do so.

Giving Advice to Non-Autism People

One of the first times I felt I was part of a community and that as part of that community, I had something to say to those who might not understand the community completely!

There Isn't Any Respite

Up until the point written about here, I think I still had a feeling that there was respite for us out there, if we really looked.  After giving up on what we thought we had found, we realized there are kids with special needs and then kids with specialer needs, and that Janey was not the first kind.

The Next Level of Tough

This is what I remember as the beginning of the next era with Janey---when it felt like the stakes were getting higher and Janey was entering a new stage of tough behaviors.

The Biggest Sleep Nightmare

Sleep has been an issue for Janey right along, but this night was the apex of it.  Knocking on wood a thousand times, it never again has been quite as bad as this fabled night.

The End Of Inclusion

It build up to this day for a while---the IEP meeting where we formally agreed Janey would leave the Henderson Inclusion School and enter a program with autism-only classrooms.

The Hospital Month

A summary of the month Janey spent in first a regular hospital and then a psychiatric ward.


This posts point a bit of a negative picture, but that's not of course the whole Janey story!  Right now, again, knocking on wood, Janey seems happier than she has in quite a while.  We are hopeful her latest medication and the changes we have made and the schools have made in how we work with her, and of course her own maturation and remarkable spirit, has started another turning point, a very hopeful one.

A Parenting Book for One

One of the huge frustrations of having a child like Janey is that any mainstream advice books for parenting absolutely don't work.  They don't cover kids like Janey.  They give advice that assumes a child can talk at a age-appropriate level and can understand basic cause and effect.  They assume a child is motivated by praise, and that a child's actions have external stimuli.  They don't cover outbursts that become so extreme a child ends up in the emergency room, restrained by many people.  They don't deal with screaming with absolutely no reasonable cause that lasts for hours or days.

I've realized over the years that I need to write my own parenting book, one that covers one child only, Janey.  I've written it in my head.  But I'm going to gradually post it here, bit by bit.  I do this because perhaps some parts of it will also apply to other children a bit like Janey.  But I caution---much of it won't.  Take what you can use, but each of you with a challenging child will also eventually write your own personal parenting book.

Today's chapter---how to calm Janey down when she has an outburst.  I should say, how to MAYBE calm Janey down, as very often, you simply can't.  But a few things sometimes work.  I'll list them in order of what will work for a milder outburst up to what we use in extreme situations.

1.  Food..  Often, when she's upset, she's hungry.  She doesn't seem to make this connection.  And her hunger, like so much of her, seems sometimes out of the blue.  She can have eaten a lot already, and still be very hungry.  We have learned to quickly get some food into her if she is starting to escalate.

2.  A shower.  Janey has taught us this one herself.  The most common thing she asks for when upset is a shower.  The warm water streaming down seems to calm her immensely.  We let her stay in the shower as long as she wants.  I sit in the bathroom with her and read.  The one has the added benefit of getting her away from the rest of the family, so they can have a little break.

3.  Turning everything off.  If Janey watching TV, or if music is playing anyplace, we turn it off.  We often have to unplug the TV so Janey doesn't turn it back on.  We stop talking much, we turn off lights, we make the surroundings as quiet and calm as possible, to avoid any external triggers.

4.  Covering Janey with blankets.  If I can, I get Janey on the bed and cover her up.  Like many kids with autism, the pressure of the blankets seems to help a good deal.

5.  Repetitive soothing touch and sound.  I will often massage Janey's feet with lotion.  While doing this, I'll sing a song, something mellow and quiet, over and over.  Sometimes it's just a made-up song, like "Massage, massage, massage Janey's feet..."

6.  Backing away.  If Janey is still upset after all this, I've learned lately I need to just get out of her way.  I don't want to be hit or bitten or have my hair pulled, for several reasons.  One is of course that I don't like being hurt, but also, if I am hurt, I naturally react in a way that escalates the whole situation.  So sometimes, I just walk away, and let Janey rage.  If she follows me, I keep moving.

7.  Nothing.  When Janey is truly agitated, nothing helps.  Nothing at all.  All that can be done is to wait it out, sometimes until she falls asleep.  Doing anything at all makes things worse.  So sometimes, we just stand back and do whatever we can do with screaming and flailing going on the background.  This is the hardest one for me to do.  I want to help Janey, but sometimes, there is no help.  She needs to just get through the episode on her own.  Of course, we step in to keep her safe when necessary, but otherwise, we just wait for the storm to pass.

As you might guess, it's been a long morning here.  I have used all these techniques and am now, in writing this, on step 7.  It seems to be working a bit.  Janey is watching nursery rhyme videos on YouTube, no longer screaming or hitting me.  Merry Christmas Eve Eve.

If I Had Three Wishes...

After this past Columbus Day weekend, which could be renamed around our house "Screamfest '14", I am quite drained.  Janey was happy to get back to school.  She hates long weekends.  I don't know quite how she knows, but she knows that weekends are supposed to be two days, just as she knows when it's quarter to five and Daddy should be home.  Yesterday was one weekend day too many for her, and she let us know in no uncertain terms.  I slept little last night, and today, I've been in a half-dream mode.  It led me to thinking---what would I change about life with Janey if I had three wishes?  And what would I NOT change?

The first thing I'd wish for---No more screaming.  Or, to modify that, only screaming in situations that require screaming.  I wish that for myself, of course, because screaming is very, very hard to hear, and because it limits what we can do as a family.  But I wish it more because of what it means that Janey screams so much.  She is screaming for a reason, whether we can figure it out or not.  I don't want to silence her voice---I want the no more screaming to be because she no longer feels the physical or mental anguish that is causing the screams.  I want to understand what makes her scream, and to be able to help her feel better.

Second wish---no more self-injurious or injurious-to-others behaviors.  Seeing Janey bite herself, hit herself on the head, scratch herself---it breaks my heart.  Again, I want to know the causes of this behaviors, and I want to fix whatever makes her feel she must hurt herself.  I also want her to not hurt anyone else.  I don't want to feel worried when Janey is hysterical that she is going to bite me, or pull my hair, or scratch me---or anyone else.  It's human nature to feel a little nervous about getting into a situation that has led to pain in the past, and I hate it when I'm half scared of being bitten by Janey.  I want her to not need to hurt herself or anyone else.

Third wish---I wish for better sleep, for Janey and for us.  When I've had a good night's sleep, I feel like I can handle this life, and I am sure it's the same for Janey.  When I don't get sleep because Janey is awake, I am overwhelmed and out of hope, out of ideas, out of patience.  If I could count on a good night's sleep every, and if Janey could also have that good night's sleep, well, I can't even quite imagine it at this point, but that's probably because I'm always half asleep.

The flip side here---what would I NOT change?  If I got that magic wand or caught that magical fish that gives wishes, what would I NOT wish for?

First non-wish---I would not wish for Janey to not have an intellectual disability.  That's one I would not have believed, before living this life.  But of all the things that autism has brought to our family, the easiest to deal with is Janey's learning issues.  They really just don't matter much.  I used to, before I had kids, read articles or books about children with various issues, and if they were intellectually normal, I'd think "none of the rest of it would really matter, as long as they weren't SLOW!", like it was the most important thing.  I realize it isn't.  Janey operates as she operates.  We delight in what she shows she knows, but in day to day life, the fact she can't read or do math or write makes almost no difference.

Second non-wish---I wouldn't want to change Janey's personality.  Sure, I'd love it if she was a little less cranky at times, but I can say the same for almost anyone.  I'd like Janey to be happier because that would mean we had figured out what upset her so often, but I don't want her underlying personality to be a different one.  She wouldn't be Janey, then.  She wouldn't be the stubborn, funny, musical, sometimes sneaky, sometimes silly, always surprising girl she is if she had a different personality.  She wouldn't be Janey.

Third non-wish---I wouldn't wish away the autism.  The autism is part of Janey.  It makes her who she is.  I might wish she was a little less affected by it---that she could communicate a bit better, that she could pursue the things she loves a bit more, but the autism itself?  The unique way she sees the world, the lack of any calculated meanness or judgement or jealousy she has, the gifts autism has given her, like her unabashed love of music, the community of other people with autism that she is a part of---how could I ask for that to be gone?  Wanting her to cry less or not hurt herself or sleep with more ease---I would love those to change.  I think that they could change, without changing who Janey is.  But the autism?  No.

I don't have three wishes, but I have my determination to help Janey.  I will try to make my three wishes come true without magic.  And I'll try to celebrate whatever the magic is that gave Janey to us.

Ten things I'm grateful for---an exercise in positive thinking!

I wrote a post earlier today, and then deleted it after a bit.  I've only done that once or twice, but in this case, I realized I was letting my own discouraged feelings creep too much into my writing.  I was writing about how I felt, not about Janey, and although I'm sure there's a time for that, I have always wanted this blog to be about Janey.

I've been impressed lately with grateful lists that people have put on Facebook.  I am going to try to challenge myself to write ten things I really, truly feel grateful for in my life, things that relate to Janey.  I guess, in a way, I'm again writing about me and not Janey, but hopefully in a way that will help me focus back in on her!  So here goes...

1.  I'm grateful Janey can talk as much as she can.  I know there are many, many parents of kids like Janey who would give almost anything to hear their child talk.  I try to never, ever take her talking for granted.

2.  I'm grateful for a husband who is amazingly supportive, a true partner in raising Janey, and her favorite person on earth.

3.  I'm grateful for my sons, who make me proud every day and who are wonderful brothers to Janey.

4.  I'm grateful for the Boston Public Schools, who do a fantastic job with Janey and other children with special needs.

5.  I'm grateful for Janey's physical health.  I don't think there's many 10 year old on the planet who have been sick less than her.

6.  I'm grateful for Janey's love of music.  It's something we can enjoy together, and something I hope is a lifetime source of happiness for her.

7.  I'm grateful for the internet, for the chance to connect with other parents around the world with children like Janey.

8.  I'm grateful for friends, both those I know in person and those I know on-line.

9.  I'm grateful for living in this day and age, where knowledge of autism is growing all the time.

10.  I'm grateful for Janey.  I'm grateful I have a daughter, a beautiful, interesting, fascinating and unique girl.  Here's a picture of her early on, the girl I thought I'd never have...

That wasn't even hard to do, and I feel better! There is something to this positive thinking bit...

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.

Low Functioning Autism and Toys

If you are a parent of a child with low-functioning autism, everything I'm going to say here is probably preaching to the choir.  You know what toys work for your child, and although they might not be the same ones I mention here, you know how hard it is to find toys they like.  I'm writing more as a response to quite a few lists I've read in parenting publications, titled something like "10 Great Toys for the Child with Autism!"  Those articles drive me crazy.  They are nearly always aimed at high functioning autism, and they include toys that not only would have absolutely no appeal to a child like Janey, but would sometimes be actually dangerous for her and those like her---things with tiny pieces, things that could be eaten, etc.  They also seem to be aimed at what the child SHOULD learn, not what they would enjoy.  So often, they have suggestions like co-operative games, which would be great as a teaching tool at school, but are generally not at all what the child with LFA like to do for FUN.  And toys should be fun.  So here's my response list, one you might be able to give a relative or friend that wants to get your child a toy they (possibly, no promises!) will enjoy.

1.  Fidget Toys  I could almost end the list right there.  The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy.  It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with.  The pictures tell it better than I can.  I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around.  These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks.  I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground  and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)

2.  Pin Art Toys  I have gotten Janey quite a few of these, and she loves them to death!  They are fascinating to her.

3.  Contained Water Toys  I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water.

4.  Various Fisher-Price Toddler Toys  And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price.  She adores their Roll-Around toys, little balls with things sealed inside to look at and shake.  And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals.  They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.

5.  Musical Toys  This is where I have to be cautious.  Although Janey adores music, often music toys are a little beyond her, and she completely ignores them.  I've gotten all kinds of toy pianos, and she seems to hate them, because she wants her music NOW, and it's a little more than she can do to learn to play them.  I've found she likes toy drums best.  Anyone can drum at a starter level and make an enjoyable sound!  She also SOMETIMES likes toys that play music, but in her case, if the songs are off-key or not sung as she likes, it makes her crazy, so I tend to avoid toys that might do that!

6.  Sensory Blankets  By this, I mean more blanket squares.  These are squares of usually very, very soft fabric, with often tags or other interesting textures sewn in.  They can be held, rubbed, sucked on, used good and hard and then washed.  Janey loves them.

7.  MAYBE Toys  There are a few toys that might be great, but that you would want to check with the parent about first.  They include Play-Doh, bubble stuff and bubble wands and drawing supplies.  You want to make sure the child doesn't eat Play-Doh.  Janey does, very much so.  She loves the stuff, but she loves it like an all-you-can-eat buffet, so we don't get it.  Bubble stuff is great, but again, some kids drink it.  Janey doesn't, but you'd want to check for sure on that one!  And art supplies----Janey has zero interest in drawing, but a lot of kids with autism do like to.  If you get art supplies, keep it simple!  Get paper, markers, crayons---not an elaborate paint set.

DON'T GET  And of course, like with everything I write her, I'm writing from my own experience.  But in general...Don't get things with lots of pieces.  They are going to get lost, or eaten or at the worst choked on.  Don't get games.  Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them.  Don't get books.  It pains me to say that, because I love books more than anything.  But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves.  Don't get videos.  Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos.  Don't get dolls or stuffed animals.  Imaginative play is not the strongest suit for kids with autism.  I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated.  And don't get food.  Many of our kids are on special diets.  Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!

I imagine this list, strangely, might be one of the more controversial blog posts I've written!  I know I don't speak for everyone.  Please feel free to disagree and add your own suggestions.  But I hope these will help someone trying to buy for the child with LFA that they love!

Ten ideas for all autism organizations out there---what would REALLY help!

The last few days have been, to be frank, awful.  Janey is crying or screaming pretty much every waking moment.  I hope she's been happier at school, but she got off the bus crying today.  She has a good week last week, which ended the minute the weekend started, but I had hoped the weekdays would be good.  They aren't.  I've been feeling fairly depressed.  The other night, trying not to cry, I sat outside and thought.  My first thought was "Nothing would help.  There is nothing that would help" But then I thought more, and thought how wrong that is.  There is several things that would help.  They are things that I can't do alone, but I think they are possible. I thought I'd put them out there, in case anyone from an autism fundraising organization ever by chance reads this.  Here is what someone in the trenches, deep in the trenches, wishes you'd spend money on.

1.  A well-staffed, well-run, free or very low cost respite center.

2.  Emergency help that parents can turn to in a true mental health emergency

3.  A free lending library of developmental and sensory toys suitable for kids with autism.

4.  Specific instructions on best practices in autism parenting, without a biased leaning toward any certain approach.

5.  True year-round schools

6.  Recreational activities for children with autism---not once a year Special Olympics, not the occasional party, but affordable and well-taught lessons and fun---swimming lessons, music lessons, dance lessons, art lessons...

7.  Education for the general public---maybe a series of documentaries in prime time---that shows the FULL range of autism, not some amazing very high functioning handpicked examples

8.  Nights at local restaurants, museums, stores and more for families with autism, where the occasional scream or hand-flap or tantrum will be just part of the jolly background noise

9.  Education for classroom aides, who often wind up doing much of the hands-on care of autistic kids at school.

10.  Research not into causes or prevention, but into TREATMENT---medications, therapies, diets, etc.

That's my list.  Any one of the items would make a different in my life personally, and I think in the lives of many of us out there.  Like most parents, I'm not looking for a handout, not looking for money or special treatment.  I am looking for help that I desperately need to be able to raise my child.  I might write more about each of these wishes in the future, but just listing them for now felt good.  Even if none of them will happen, it's better to know there is something that COULD help.  Let's challenge every autism organization out there to help---to remember we need help that is hands-on, respite-giving and affordable.  Desperately.

Talking back to "I don't know how you do it"

Over the years, the phrase "I don't know how you do it!" has come up over and over in autism writing as probably the phrase autism parents most dislike hearing.  I admit at times it's bothered me a bit too, but lately, I've come to peace with it. It's struck me it's all in how you take hearing it, in what you hear when you hear it.   What do I mean by that?  Well...

Take it as a compliment   When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you  well!"  Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.

Take it as a question  Think of it worded as "HOW do you do it?  Imagine that the speaker is truly wondering how you cope.  Use it as an opportunity for education.  Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best.  Turn them into an advocate by informing them what actually helps and works.

Take it as a confession  I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it.  I often let people know that I felt that way too, before actually being faced with special needs parenting.  We learn as we go.  Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids.  It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".

Take it as an offer of help  This one can be fun.  Say something like "You know, I don't know how I do it either.  Thanks for noticing.  Yes, I'd LOVE your help.  When can you babysit?"  Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.

Take it as shock  When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond.  I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting.  People just don't know what to say.  I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.

Take it as better than the alternative  What if people said instead "I could do that much better than you.  I can certainly see how you do it, because it looks very easy.  I don't know what the big deal with autism is.  It's a piece of cake"  I don't think most of us would like that much.  In a way, hearing the phrase is a badge of honor.  We are doing something tough, and we are being recognized for it.

Take it as a statement of love, for you and your child  The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me.  They might mean any of the meanings here, but they are saying it because they care.  Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said.  Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.

None of us know how we do it.  We are like cartoon characters that walk off a cliff.  As long as we don't look down, we just keep going.  We might be defying the laws of physics, but we are doing it, one way or another.

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

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.

Ten iPad apps Janey likes

Notice here I didn't say "Ten iPad apps Janey has learned a lot from" or "Ten iPad apps I like".  Over the year we've had the iPad, I've realized if Janey doesn't like an app, it does no good.  It can be the greatest learning app on the face of the planet, but Janey's not going to use it at home unless she likes it.  She knows very well how to use the button to take her back to the menu of apps, and she never hesitates to use it freely if something doesn't interest her.  However, the few apps she likes get used a fairly lot.  Not a HUGE amount.  I wouldn't say the iPad is quite the success with Janey I'd dreamt it might be.  She likes it, but as a toy she turns to now and then.  I think she's learned a little from it, by chance, when an app that appeals to her just happens to have a learning component, but it hasn't been any huge breakthrough devise for her.  That being said, I'm glad I got it for her.  Any toy she actually uses and enjoys is a good toy, and the rest of us have fun with it when she's not using it.  Anyway, here's the list, with links when I can find them!  (in no particular order)

1.  PianoBall

This is a simple piano app.  You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard.  It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next.  Janey actually does this now and then, but mostly just fools around the colors and keys.  I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.

2.  Fish School

Schools of fish form the letters of the alphabet and numbers.  You move to the next letter by swiping across the screen.  This was the first app Janey got into, and she still likes it a fair amount.  It's nice and simple and colorful.

3.  Christmas Song Machine

This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite.  It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly.  You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes.  If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.

4.  Elmo's Monster Maker

This is a cool app with a lot to it, but Janey doesn't use it the way it was intended.  You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life.  The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc.  However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on.  She does this over and over and over.  I've often tried to interest her in the faces, but that is not the point for her.  You might have better luck!

5.  Starfall ABCs   

This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home.  You pick a letter block and the app shows a few things that start with that letter.  Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song.  Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this.  She enjoys it a great deal, though.

6.  Firstwords Christmas

This one actually DOES teach.  I was thrilled when Janey got into it.  You get mixed up letters of a word, and have to put them in the right place, like a puzzle.  When you do, the app says the word and moves a picture around, and makes a sound.  Janey has played this for hours.  Over the year, I've seen her ability to match letters increase hugely, partly because of this app.  There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.

7.  FindMe (autism)

This is the only app specifically designed for autistic kids that Janey has gotten into.  You find a little boy in an outdoor setting that gets increasing busy as you get better.  When you have found him five times, you get a dancing shapes reward.  Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat.  I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at.  If she had to find letters or numbers or shapes, I think she'd be motivated to do so.

8.  Noodle Words

This is a very, very well designed and cool app.  You open a magic box of words, pick a word, and then play with the word.  For example, "surprise" lets you get all kinds of surprises by touching it.  There are little guys at the bottom of the screen that interact with the words.  It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with.  I wish they'd expand this to much more words.

9.  GoFun

Here's one of those "why in the world does she like this?" apps.  It's a puzzle app.  You pick a picture and then it turns into a puzzle to do.  The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures.  Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over.  She never finishes it.  There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then.  I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.

10.  Working on the Railroad

Another app I wish was better, but one Janey likes a lot.  It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc.  The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.

So there's her list.  This is no means a list of the best apps I've found.  There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad.  I'd love it even more if Janey liked more of those apps.  If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes.  I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun.  If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too.  But the designer would have to actually understand autism, or at least Janey's form of autism.  They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents.  You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them.  Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours.  That's life in Autism City, I guess.

Autism Awareness Day

It's Autism Awareness Day, and I am thinking about how little awareness really does for anyone. It's great to be aware autism exists, but hey, I'm aware lots of things exist, and that doesn't do a bit of good to people dealing with them. Fire exists, cancer exists, poisonous snakes exist, floods exist....and so on. What I wish---there was a Help People Dealing with Autism Day. Here's some ideas....

1. Offer to watch a child with autism. It's not as hard as you think. Their parents do it almost every hour of the day. Yes, they might cry. Yes, they might show strange behaviors. Yes, it might not be all fun and games. But it might be---our kids can be a lot of fun sometimes. And even if it isn't, think about how much just a few hours of freedom means to the parents. It might save a marriage or save someone's sanity.

2. Really get to know a child with autism. If you are around them, and I'm talking here not babysitting, but with the parents around, sit down with them. Play with them. Don't do this trying to teach them things, or quizzing them to see if they know things. Follow THEIR lead. If they want to hear the same book 50 times, read it to them 50 times. You aren't their therapist or teacher---you can just be their friend.

3. Do something for the sibling of a child with autism. They, like the parents, live with autism all the time, but unlike the parents, they didn't choose to have the child. They love their siblings with all their might, but it's not an easy life for them either.

4. Ask a parents of an autistic child what supplies/books/materials/treats their child might really like. Little things can be so helpful---you don't have to spend much to get something that might be a huge treat for the child, if it's something they are really into.

5. Support public funds being spent on SUPPORT for autistic people---after school funds, recreational programs, housing for adults, respite care and much more.

6. Say something nice about the autistic child. Don't act like they are a tragedy. They aren't. Every parent likes to hear nice things about their kids.

7. Don't,don't, don't,don't, don't offer us information about a "cure". You are not telling us anything we haven't already thought about, and it's hurtful to many of us.

8. Be a friend to the parent---just a regular old friend. Nothing refreshes a parent like doing something fun with a friend.

9. Include the child in events like birthdays or other parties, but understand if the parent decides it won't work out. Most of us parents are very sensitive to how a child will really do at various events, and we will always appreciate the invitation, but we might not accept.

10. Don't assume our child will have special abilities, or that our child is a genius inside, or the child is slow, or anything about the child's abilities. Ask the parents if you are close with them. All kids have special abilities in their own way, but most children with autism are developmentally delayed. We parents know that. We can offer the best assessment of what our child is capable of.

11. If you see a child in public that you think is autistic, and they are having a meltdown, don't stare, or comment, or look disapproving. If there is a simple way you can help, you can try to, or you can just ignore the whole scene, or you can give the parent a sympathetic smile. We've all been there, even with our "normal" kids.

12. Know how any help at all is EXTREMELY appreciated by the parents. You can make a huge difference in their life by helping.

And if you got this far, thanks for caring enough to read this!