Autism Awareness Day---the adults with autism version

 I've had this blog since Janey was three and first diagnosed.  Now she is 19---hard to believe.  That's a lot of World Autism Awareness Days under our belts.  I was thinking today how my awareness wishes for the general public have changed since she became an adult.  

First of all, there's just that---she's an adult.  There seems to be thought out there that autism is something for children.  I am not sure what people think happens to those children with autism---upon turning 18, they are suddenly no longer autistic?  They just somehow disappear?  No---they are still around, still autistic, still in need of services and help.  

I remember thinking when Janey was getting close to an adult that I wanted to be sure to keep writing about her, to help in my small way to raise awareness of autistic adults.  But as you might have noticed, I write far less than I used to.  That is tied into something else I'd like to make people aware of.  As the years go by, there is less new news.  I might be negative and say there is less hope---but that's not really it.  There is less urgency, somehow, to DO something, to FIX something.  That is an awareness that doesn't need a special day for us to arrive at.  If there is something Janey isn't doing at this point, it's unlikely she will be doing it in the future.  And that's okay.  

My father asked me something the other day that made me think.  He said "You must sometimes have some sadness and regret over things that Janey will never do".  And I realized---I don't.  I don't think a lot about what Janey won't be able to do.  What comes into my head often is the phrase "That's not her path".  It's like how I don't regret that I can't fly, or that I'm not an astronaut, or a world class figure skater.  I was never going to be or do those things.  I don't regret what was not my path, and I don't really feel regret for Janey that she's not going to do things that were never her path---live on her own, get a job, get a high school diploma, go to college.  She has her own path.  That's something I'd like to make people aware of---that everyone has their own path, their own way through life, and we don't all need to have the same milestones along the way.

Lately, much of our life is bureaucracy, the endless series of obstacles to overcome and hoops to jump through to get Janey what she needs as an adult.  THERE'S something I wish people were more aware of---how hard it is to get even the smallest amount of help for people like Janey, except for school.  For example, we are working on registering her for services when she's 22.  She is 19 now, so it might seem early to start, but believe me---it's not.  First, we had to do an endless form and send in a huge amount of paperwork to prove there was a need for her to get adult services.  Then, we got requests to send even more---more reports, more proof of her autism, more IEPs, things like that.  THEN we got assigned a worker, and we took Janey to meet her.  The next day, I did many hours worth of phone interviews about Janey's development and current level of functioning.  You might think all that would be enough.  But of course not.  The worker told us we need a letter from her psychiatrist outlining all the reasons that Janey meets the definition of autism---despite her being diagnosed as such at least 3 times in the paperwork we already sent.  We are working on getting that letter, but getting no response from her psychiatrist at all.  Once we get that letter, if we ever do, finally she is formally put in to MAYBE get services---all this is just part of the application.  Once she is approved (and I would certainly hope she will get approved, but who knows?), we get assigned ANOTHER worker and we start trying to figure out if there are actually any programs out there for her (which it is very possible there won't be, from what I hear),

My boys both went to college, and got good financial aid, and I swear that was about 10 times easier to apply for than all this is.  You could spend 5 minutes with Janey and know she needs lifelong services.  Tony and I are fairly good at paperwork, and we are about out of our minds at this point.  What in the world would someone who might not read well or speak English well do to get this kind of help for their child?  WHY is it so hard?

And this is just ONE of the tasks of adulthood.  We also had to apply for Social Security for Janey, which wasn't quite as complicated but took over a year to be approved, and we had to get guardianship for her, which was another nightmare of complexity and is something we have to repeat EVERY YEAR.    I don't think it has to be this hard.  I think there's an impression out there, and in fact people have said to me that they think people with autism "get all kinds of help and services", like you get the diagnosis and suddenly help and money and respite and programs are all provided in abundance.  I'd like people to be aware that most certainly is not the case.

However, of everything I wish people could be aware of, the biggest is this---Janey is an amazing person.  She is our joy.  She loves so many things---good food, good music, good (in her eyes anyway) videos and movies.  She has a smile that is so wonderful it's impossible to describe if you haven't seen it.  She's funny and beautiful and in her own way, very smart.  You might look at the bare facts about her---a recorded IQ of 30, very little useful speech, not fully toilet trained, unable to read or write---and picture a tragedy.  The tragedy to me is that anyone would think that.  She is everything to us, and she deserves a full and interesting life as much as anyone does.  

I wish sometimes everyone who is responsible for any kind of public policy that affects the disabled could meet Janey.  And meet all the other amazing people out there that I've met because of Janey---I wish they could see for themselves the actual people they are making decisions for.  Maybe I'm a cockeyed optimist, but I think if they could, they would do all they could to make the world a place where Janey and all the others like her could not just survive, but thrive.

The Bison, The Scorpion and The Mystery

Janey watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.

 One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion" The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. 

 So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?

 I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.

 It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do? And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?

 I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.

Celebrating Autism Day by going all AAC

I'll just call it Autism Day, without putting an "awareness" or "acceptance" or anything else on it.  Autism deserves a day, and it doesn't need any modifiers.

Proloquo2go

I'm starting something new this Autism Day.  Janey has never shown much interest in AAC apps (Augmentative and Alternative Communication).  This year, however, her school has been using a program called TouchChat to has her say certain things, like to help her ask other rooms if they have any recycling or to help her participate in morning meetings.  Reports were she showed some interest in it, and I decided to go for it---to really try to do AAC at home.

TouchChat

The first thing I needed was a more up to date iPad for her, and the very kind gift of a dear friend helped us out there and allowed me to buy Janey a brand new one.  She still is using the old one we got her, and that thing has been through hell and back, protected with a Gumdrop cover.  That is one product I will recommend to the stars and back.  So I've ordered a cover for the new iPad.  Today, since it's Autism Day, a lot of AAC programs were on sale (although not TouchChat).  Since we got the help with paying for the iPad, I decided to toss caution to the wind and buy 3 different AAC programs---TouchChat, ProLoQuo To Go and Aacorn.  The last two were on a good sale.  I figured I'd fool around with them some before showing them to Janey, and see which she likes, or if she likes a combination.  

Aacorn

So far, after just a little bit of testing by me, I really like Aacorn.  It is set up in a very kid-friendly way, and had a great tutorial.  But that's an extremely early observation.  I'll be writing about our AAC attempts in days to come, I'm sure.

How am I celebrating otherwise?  Well, Janey will get her trip to the ice cream store when she gets home, and we'll watch some videos, and Daddy will probably make her some soup for dinner, and we'll snuggle at bedtime.  There might be a car ride, too.  Nothing much different than what we do every day, because in a way, every day is autism day here.  We've figured out the routines that work, mostly, and we don't stray a lot from them.

I'm not going to try, this year, to say anything summing up or meaningful or awareness-raising for this day.  Part of that is just tiredness.  Part of it is a growing realization that thinking about autism as one entity, one type of life, is like calling all different kinds of fruits just "fruit".  There are way too many ways autism shows itself, way too many different variations, to be able to say much about the autism community in general without over-simplifying.  I can talk about Janey, and I can talk about our family, but I can't really speak for others in any general way.

I can, though, sent out a special wave of love to everyone out there with a life that includes autism, whether it be those who are autistic themselves or those who love someone with autism.  Happy Autism Day!

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

World Autism Acceptance/Awareness Day, through my own Janey lens

Well, here it is again, that day that I am sure is like Christmas for all of you out there---World Autism Acceptance/Awareness Day!  All sarcasm aside, sometimes I'm a little glad there's a day of the year set aside for autism---a day that is about what every single day is about for my family and me.

I thought I'd write about Janey's afternoon yesterday.  It illustrates the best and the worst of how autism affects Janey, and therefore affects our family.

Pictures I took this morning of Janey

Janey got off the bus in a fairly cheerful and mellow mood.  She was happy to find some chips to eat, and we had a quiet and companionable half hour as she ate them next to me.  Freddy got home then, and Janey was happy to see him.  Her hands were covered with chip dust, and he said if she washed them, he'd take her to the ice cream store, as she had asked (as she asks every single day after school).  After a few reminders, she washed them like a champ, and he kept his promise and took her to the store.  They both came back in great moods.  Freddy remarked on how very good she was, and how much fun they had.  The ice cream store (as most of you know, actually a corner convenience type store) is only a few houses and then a few businesses away from us, on the same side of the street, and now as we pass our neighbors' houses, we no longer have to hold Janey's hand.  She loves that---she skips along singing.  We take her hand again by the gas station, as Freddy did yesterday.  It was great seeing what a good time they both had, and Janey ate her ice cream happily.

A nice moment before they left---after Janey washed her hands and Freddy told her he'd take her to the store, she hugged him---her full-on, somewhat overwhelming hug.  Freddy was quite touched.  She is gradually showing more and more of an interest in her siblings, and it was really a nice moment.

Taken within three minutes, they show her changing moods.

So---great afternoon, right?  Well, then it took a turn.  Janey decided to graze the refrigerator for something more to eat.  She found raw turkey meat.  Freddy caught her in time and told her to put it back, and when she came over to sit by me, I said "Janey, you know we never eat meat that hasn't been cooked"  Evidently, that was something she found unacceptable to hear.  She hit me on the nose, very hard.  I grabbed her hands and said "No you don't!" and she lunged hard at me, trying to bite me with all her might.  I yelled to Freddy for help, and he carried her away to a chair and held her back as she tried as hard as she could to bite him too.  Being unable to do that, she kicked over a coffee table by the chair, with Freddy's afternoon coffee on it.  It spilled all over the floor.

Freddy told her, very calmly, that she needed to clean up the coffee.  And so started the 20 minute siege.  She was not inclined to clean up the coffee.  She wanted instead to bite Freddy.  He stayed calm and insistent, telling her to go get the paper towels, which she finally did, after about three biting attempts.  Then, again interrupted with many, many lunges at him, she very, very slowly did clean up all the coffee and threw away the wet paper towels.  By the time that was over, we were all exhausted.  Janey got her iPad and sat quietly and cruised YouTube.

It's not all smiles, so we take them when we can!

And that is Janey---albeit, a rather extreme example of Janey at her best and worst.  That is what we are aware of every day.  That is what we have leaned to accept.  Sometimes it's very easy to accept Janey.  Sometimes, it's very, very hard.  And as I talked about yesterday, accepting doesn't mean liking always, or not liking, always.  Sometimes it means adoring.  Sometimes it means despairing of.  But if I could tell the whole world about autism, I would like them to understand both sides of it.  I don't want a gauzy unicorn and rainbow filled fantasy autism image.  I don't want a horrifying, Autism-Speaks-Style tragic view of autism.  I want people to know Janey, and to know all of your girls and boys, all the many, many faces of autism.  I want them to know the stories, and to know the children we love so much.  Janey, this day is for you.  I love you so, so much.

Accepting Autism Acceptance

Tomorrow is Autism Acceptance Day.  You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name.  I think most of us are aware of autism by this point.  The next step is acceptance, and that is a step not only for the general public for but many of us personally.  Or at least it is for me.

I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never!  Accept autism?  That's not going to happen!"  I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism.  However, I think I'm finally there.  I've figured out what autism acceptance means to me.

Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.

When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others.  It DOES mean accepting that those behaviors are part of how autism affects her.  It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.

When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism.  I don't have to say "Janey is wonderful DESPITE her autism".  I can say "Janey is wonderful partly BECAUSE of her autism"  That's a tough one for most people to take, somehow.  But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.

Autism acceptance applies to ALL parts of the spectrum.

This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey.  I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing.  Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.

Autism acceptance also applies to acceptance of a family's choices

It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is.  Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism.  Some people embrace ABA.  Others do Floortime.  Others have put their children on special diets.  Some use vitamin supplements.  Some use medication.  Some homeschool.  Some have children in residential placements.  There are an amazing number of ways to educate and medicate and provide therapy to children with autism.  We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.

I will close with a video a lot of you have already seen, as I put it on my Facebook page.  It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her!  She also says in the video "I have autism"  I love her sweet voice as she says that.  I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do.  I accept Janey's autism as part of the amazing little girl she is.  I love you, Janey.

Here's the video!

"But there are so many programs out there!"

So often lately, I hear about a new great program for kids with autism.  Sometimes, I hear about it in the news, or someone tells me about it, or I dig it up with some research.  Often, I get very excited about the idea of the program, until I look at the fine print or try to apply, and then find that Janey isn't eligible.  This is not something that just affects Janey.  Autism covers a HUGE range of behaviors and abilities.  Saying that a program is for children on the autistic spectrum pretty much says nothing.  It's the fine print that figures out WHICH children the program is for.  But the general public would certainly be excused in thinking that any parent of an autistic child could pick and choose from tons of exciting opportunities.  

I want to emphasize I know how lucky I am to be living in the time and place I am.  There ARE opportunities for Janey.  She goes to a school program designed especially for children like her.  She gets speech therapy, occupational therapy, swimming lessons, music therapy and more---all at school.  She has a terrific teacher.  Last summer, she went to a camp that I can never, ever say enough about---Camp Fatima---a dream camp.  I am grateful for all the help Janey gets.  And many of the other programs we aren't eligible for, I might not want for Janey anyway.  But I just wanted to illustrate that just because you hear of a program for children with autism, it doesn't mean that ALL children with autism can participate.  Here's two examples---

The Boston Conservatory has a program that gives lessons in music instruments or voice to children on the autistic spectrum.  The program sounds incredible---read about it here--and I eagerly went to their FAQ page to see if Janey would be able to access it.  Well, this line stopped me cold "Yes, students must already possess basic proficiency (i.e. can play without hand over hand instruction) in their instrument" ,written as an answer to whether the children had to have prior experience.  So, basically, this wonderful program is available only to kids on the autistic spectrum who have already had lessons---kids high functioning enough to have been able to be taught the basics of their chosen music area already.  And they must have been able to do on in regular classes, as the page says this new program is the only of its kind in the country.  It also costs $1000, which isn't so much the issue---not that we have a thousand dollars lying around to spare, but if the program was open to Janey, I would brave hell or high water to find that money somehow.  But---it isn't.

And here's one where Janey was too HIGH functioning.  I heard about a study being conducted here in Boston to help children with autism acquire language, using new techniques (read about it here).  I registered to be considered for the program, and got a call yesterday from a very nice woman who told me all about the program, which sounded wonderful---very intensive and innovative.  I kind of had a suspicion here that Janey would not qualify, though.  The program is for children called "minimally verbal"  I would consider Janey to be minimally verbal, in that she doesn't talk except for simple requests or echolalia, with very rare exceptions, but I do know that that is much more verbal than many kids with autism (and I know how lucky I am that Janey does talk that much)  And indeed, once we were screened, the researcher told me that Janey has too much speech to be included in the study.  I respect that.  It's a scientific study, and she doesn't meet the guidelines.  But I still felt disappointed.  Seven years of speech therapy have not significantly improved Janey's speech, and I would love to have a chance to try something new to help expand her talking.

I could give a lot more examples here, but these two illustrate what I mean pretty well.  I know there are programs which Janey would be right for and other autistic children would not.  But for someone without knowledge of the nuances of autism, it might seem that there are far more opportunities out there than there really are.  That's why it's so crucial that organizations that support autism put their funds into DIRECT SERVICES---not some vague "awareness" campaign or research that might possible help some theoretical child 10 years in the future.  We need help NOW.

Really, Parade Magazine, Really?

A few days ago, I saw a link to an online article from Parade Magazine---6 Great Toys for Children with Autism.  As I'm always on the lookout for toys that might engage Janey, I gave it a click.  Immediately after reading the article, I was so annoyed and upset that I told myself not to write about it until I'd given myself a few days to calm down.  Well, it's been a few days.  I guess I'm not quite as upset any more, but I still am pretty bothered the article.

What's my issue with it?   On a minor note, it bothers me because it feels slapped together, like someone said "Autism is BIG right now, and it's April, autism awareness month!  Let's get an article about autism that is upbeat, stat!"  But my big, major note issue with the article is that it completely and totally assumes every child with autism is high functioning.  

Here's a few quotes--- " As children get older, more complex board games like Boggle, Scrabble, checkers or chess are terrific"    Oh, yeah?  I can't wait until Janey gets a little older and can play Scrabble or chess!  Wait, I forgot, we are living in Realityland here!  Janey is NEVER going to play Scrabble.  I shouldn't say never.  It's highly unlikely Janey will ever play Boggle or Scrabble or chess.  It's highly unlikely she'll ever play Candyland, the game mentioned as being "simple"  Sure, these games might help her with her social communication, as the article helpfully suggests, but that would be assuming she was able to understand them.  And assuming she didn't put the small game pieces in her mouth.

Here's another quote...“It sounds almost too simple, but just a toolbox with a hammer, nails, and a screwdriver can be a great inspiration for play,” says Whitney. “Using tools not only builds fine-motor skills, it also builds a sense of accomplishment when kids can create something they’re proud of.”  Uh, okay.  Why did I never think of that?  I've got to get Janey some nails and a hammer right away.  I'm sure she won't use the hammer to break the TV, or put the nails in her mouth, because she'll be feeling so proud of that castle she's going to build!

And here's a 3rd and final quote, although I could quote the whole article, really...“I’m a huge fan of technology, but I also think it needs to be balanced with other activities that help promote needed skills. So maybe it’s an hour of computer time in exchange for an hour spent playing outside with a friend.”     This one maybe bothered me the most, because it's almost on.  Yes, the iPad is great, and yes, it needs to used in a balanced way.  But the part about an hour outside playing with a friend?  That almost felt cruel.  First of all, Janey doesn't have friends.  She has school friends, that are her friends because we call them her friends, but she doesn't have friends she could dash outside and play with.  If she did, I would still need to be right next to her, to make sure she didn't run away, or eat random things off the ground.  It sounds idyllic---go outside and play with a friend!  But it's not reality.

The article wouldn't bother me as much if it was only Janey it didn't understand.  I certainly don't expect every piece of parenting advice to apply to Janey.  But I would guess the suggestions there would not work for MOST kids with autism, including not only almost all the low-functioning ones, but most of the high functioning kids, too.  It's a perfect example not getting that autistic kids are not just quirky regular kids, kids we can mildly modify regular advice for.  

Parade Magazine is hugely, widely read.  If you didn't know much about autism, and read this article, you'd, well, still not know much about autism.  Or you'd get a picture of a very small percentage of the autistic kids out there.  You'd wonder what the big deal was.  Get them some good cooperative games, maybe a zip line or tennis lessons, take them to a building workshop at Home Depot, have them read a few books that teach socially appropriate behavior, and they'd be fine!   If the article had even ONCE included a note that not all children with autism could access the toys mentioned, that a good percentage of children with autism are also intellectually disabled and require constant supervision, I'd have been fine with it.  But it didn't.  It addresses the imaginary world of autism, one filled with brilliant, slightly different but at the core just the same as you and me, future so bright you've got to wear shades autistic kids.  I don't have that model.  I have a real life autistic kid, my amazing Janey.  And we'll stick with toys that she actually can use.

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 Friendly Day instead of Autism Awareness Day

The big exciting holiday of the year for autism families is coming up in just two days!  Yes, indeed, it's Autism Awareness Day!  I just can't wait, because that will be such a fun day for Janey and all of us---yes---all those great activities for autistic kids and their families!  What?  What's that you say?  There are really not any exciting fun times for autistic kids on that day?  What the heck?  It's just somehow a day named for autism, where for some reason you are supposed to "light it up blue"?  How is that going to help anyone?  And who isn't aware of autism these days?  Is this a day to reach out to the 1 or 2 percent of the population who for some reason has never heard of autism?

Now, of course I'm just being a little nasty.  I am glad there's an autism awareness day, and I plan to write a post about it on the day and be more with the program.  But lately, I've been thinking about what I'd like better than a day to make people aware of autism.  I'd like something I would call an "Autism Friendly Day"

Here's my dream for that day.  All restaurants, stores, recreational establishments and more would be encouraged to participate, which would mean they would set aside that one day to do what they could be be autism friendly.  Restaurants could have a night where families with an autistic child could eat out, in an environment friendly to a little bit of strange noisemaking, random tantrums and odd food choices.  The wait staff could get a quick training ahead of time about what to expect.  I would guess it would actually make the restaurants some good money on an otherwise normal Tuesday, because a lot of families with autistic kids would love to eat out with them, but don't want to have to worry about other diners being annoyed by their children.  Stores could have a special time set aside to actually shop with your autistic child, without people staring or being nasty if your kid hates shopping and throws a crying fit while you are desperately trying to try shoes or clothes on them---and maybe other shoppers could refrain from staring or saying your child seems tired and should go home.  Places like mini-golf or arcades or indoor gyms could take one day out of 365 to cater especially to autistic kids.

While I'm dreaming, maybe schools and churches and community centers could get in on this.  I am extremely lucky Janey goes to a school where she is always included, but not every child is that lucky.  Maybe for that day, the separate autism classes could join the regular classes, and the "regular" kids could learn about autism, and meet some fascinating kids with autism they would otherwise not know.  The Sunday closest to Autism Friendly Day could be a day for churches to welcome families affected by autism.  That would be wonderful---our family could try a church together, something we have not been able to do since Janey's regression.  Community centers could open to kids with autism for recreation---they could have some classes or open gyms set up.

I think this day would do a lot more to raise autism awareness than the current setup.  Nothing makes you aware of autism like actually spending time with a child with autism, or an adult with autism.  You can't learn about autism solely by reading about it.  And becoming more aware of what autism actually is would benefit everyone.  Businesses and churches and restaurants would benefit tremendously if they reached out to families that have simply stopped using their services due to their autistic child.  The general public would learn what the real needs are of families affected by autism, and the fear of the unknown that I am sure often keeps people from getting to know our kids would be reduced.

Best of us, this day would actually be a fun day for families like ours.  It would be a treat, in a life that often is stressful and tiring and isolating.  It's a dream, but I think it could easily be reality, without a great deal of cost or bureaucracy.  I'd love it.

World Autism Awareness Day

Well, here it is, World Autism Awareness Day again, and I don't have a single WAAD card out.

I did a quick look today to see what kind of events are planned for today. As I kind of half expected, I didn't really see any that were FOR autistic kids or adults. Lots of fundraisers, walks, lectures, etc. But not something I could take Janey to. I am grateful for the awareness, for the research, for all of that. But if it's autism AWARENESS day, perhaps it would be a good day to expose people to actual human beings with autism---to let them see what autism actually is and isn't. I had ideas like having restaurants have a special time, from 2-4pm or something, where they would just for that day be autism-friendly, and you could go there and not feel worried if your kid screamed the whole time, or spilled water, or ran around. You could just sit and eat a meal among other families with autistic kids, and smile at each other, and enjoy being out. Or another idea---places like indoor gyms or pools could have an autism time every April 2nd, so you could get some family recreation. Or maybe somehow there could be highly staffed parties for JUST the kids, so you could drop them off for an hour or two knowing they were doing something special and fun, while you got a break. You know, sort of like how parents of "typical" kids can sometimes take their kids to birthday parties and LEAVE them there and get coffee---that kind of luxury treat for everyone!

But those are dreams. I have to be content that Janey is living in a world that certainly IS more aware of autism than a world 20 or 40 or 100 years ago would be. I am very lucky that way. People know what autism is, kind of, even if they haven't met a lot of people with it.

I'm thinking of ways myself I can actually live up for the name of the day. How I can I make people more aware of autism? One thing I try to do is tell people Janey is autistic. I like to do that for many reasons. It explains her behavior, it lets people know she isn't just being rude in not answering them and it lets them meet someone with autism. It has worked well for me overall. There are quite a few stores where Janey is known, and I feel good about that. This blog is another way---I try my very hardest to write honestly here---to bare my heart about Janey, not just the bad but the good. I wonder if I show the good enough---that's a part of autism I want people to be aware of to---that Janey is a delight often, that she is fascinating in a lot of ways, that I love her intensely and I always will. I want to give some hope to other parents with newly diagnosed kids. But I don't want to lie. I don't want to say it's better than it is, I don't want to be all sunshine and flowers. I want to be honest. I can also encourage my sons to talk about Janey. I sometimes suggest her as a topic for essays at school, or tell them to not hesitate to explain to friends why sometimes they prefer to spend time at other people's houses instead of having kids here. I want them to be proud of her as a sister, but to also let them know it's hard, it's something THEY should be proud of themselves for---being good brothers to her.

And so awareness is a good thing. But I wish this day could somehow also INCLUDE those with autism, instead of just being ABOUT them.