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.

The time lost with Janey's brothers

Last night was a little bit of a tough night for William, my older son.  It was the night a lot of colleges gave decisions, and he didn't get into a few he hoped he would.  He's still been accepted at several of his top choices, and he has gotten great scholarships, but that didn't change the fact it hurts to be rejected, no matter how much you know that the schools are hugely selective and that to get on the wait list to two Ivy League schools in a night is not a bad thing.  Especially when you are 18, it feels huge and sad.  I tried to comfort him, and I hope I did, some, but I think he got more comfort from his high school adviser, and that's okay.  He said that she had been with him for more of the journey, so she understood what he was feeling more, and that was fair.  But still...it made me sad.  It made me sad because that is not what I wanted to be as a mother.  In my mothering dreams, I'd be there with my kids, all of them, for every step of everything.  We would have visited all the colleges he had dreams of, together.  We would have worked together on his essays (essays that in this life I have not even read, but that's his choice---I could have done at least that!), I would have had time to always be around when he wanted me around.  The fact that I think he's just as happy I was quite hands-off (he's told me many times that is how he likes it, and actually thanked me for not pressuring him or hanging over him) doesn't matter in my mind.  If he HAD wanted me along for every step of the process, it would not have been possible.  With Janey, I don't have that kind of freedom.  Every trip, every free time block, every day out has to be planned and worked out in advance.  It can never involve both Tony and me, except for rare cases when one of the boys can watch Janey or when she is at school.  And even the smaller times, the random moments of just being free to listen to William or Freddy, are limited.  I can't tell you how many times that that I've had to say "Just a minute---Janey is being crazy and I need to keep an eye on her"  Or the times I've tried to sneak a moment to look at something on their computer and Janey used the time to spill something, or freak out, or come ask for food that she wants that second.

When I read autism memoirs in the past, there was often little mention of siblings, except something along the lines of "Of course the intensive all out full press routine of curing our little guy left little time for his sister, but she loved to help us, and she was stronger for our hours of neglect of her"  Not exactly that, but that's how I read it.  I was determined when it became apparent how great Janey's needs were that I would not be like that.  I hope I haven't been.  Our situation is a little different than some, though, because Janey is the youngest, and the youngest by so many years.  If she is hungry and the boys are hungry at the same time, I can tell them to fix themselves something.  I can't tell her that.  If she is crying and they want me to watch a funny YouTube video with them, I expect them to not mind that I have to tend to Janey first.  If I choose the video first, they know that disaster will follow.  But that doesn't change the fact they are shortchanged.  They don't get my energy, my time and my ears as much as Janey does.  I hope they know they get my love just as much, but I still hate the inequality.

I have great sons.  They are independent, fascinating, wonderful guys.  I don't write as much about them as I would, because they are teenagers and no teenager wants cute little stories about them to be out there in the Wild Wild World of Web.  I don't think they have been damaged by Janey's autism, but I don't think there's any question their childhoods and teen years would have been easier without her being autistic.  Just like I sometimes dream of the daughter that is the one I'll never have, they probably dream of a sister they will never have---one that will be there to listen to them, to share grown-up things with them, to talk to about all the things Tony and I did wrong---the roles a sibling plays.  Instead, they know in their hearts someday they will be responsible for Janey.  They didn't choose to have a child as Tony and I did, but in the end, they will be the ones with the work of caring for her.  I can tell them that's not the case, but in reality, it is the case.

I know the conventional thing to say here would be to point out all the benefits of having a sibling with autism or another special need---how they have learned compassion, learned to love without expecting something in return, learned they are not the center of the world, learned that all people have value.  And those things are true.  But I think, overall, it's not a trip to Holland for them.  It's not just a different but equal sibling experience.  I want to thank them both, my amazing sons, for being kids I can feel so proud of, and I want to say I wish I could be the mother you deserve.  There's endless amounts of love for however many children you have, but there is not endless time, and that's the real kicker.

Playing to Strengths

I went last night to hear a speaker at my younger son's school, Michael Thompson.  He has written quite a few books about child development and school issues.  His talk didn't tie in much to autism issues, but it was very well done and gave me some good insights into the boys.  However, one thing he said really struck me. He said something along of the lines of "No-one specializes as an adult in the area that they need childhood special assistance with"  He meant it mainly in relation to kids with learning disabilities, like dyslexia, but it seemed to me to be very relevant to autism education.  Very few kids with autism will ever have a career in an area requiring great interpersonal skills.  Janey probably isn't going to have any career, but in terms of what she will enjoy and have as a hobby as an adult, I doubt it's going to be in the areas she has the most difficulty with.  She still needs to learn in those areas.  It will be very helpful in her life if she knows how to greet people and to say goodbye to them, to write and recognize her name, to maybe even some day understand money just a little.  But she's not going to be doing greeting or writing as a hobby.  Thinking of higher functioning kids, there are many that have great areas of strength---perhaps math, or geography, or even something like knowing public transit maps by heart.  However, the way the education system is set up, we work far more on the areas that are tough for a kid than the areas that are easy or enjoyable for them.  I don't think this is avoidable at the elementary school level.  Janey and other kids do need to learn some basics.  But I'm thinking about what I'd like Janey's education to look like when she is in junior high or high school---how I can work on her strengths and not spend much time on areas that are not going to be a big part of her later life.

Right now, the biggest strength I think Janey has is in her love and appreciation of music.  Anyone who is around Janey for any amount of time knows that she responds to music like little else.  She memorizes songs, both melody and lyrics, very easily, and she remembers songs forever.  She is discriminatory in her tastes---she doesn't just like everything she hears.  She's very partial to bluegrass and country gospel music, and to certain songs within that genre.  This week, she's gotten into a song called "Uncle Pen" by Ricky Scaggs, and I have heard it in the car at least 30 times, because no matter what else I try to play, she asks for it again.  It's got a complex sound, and a strong beat, and she adores it.  I don't know if Janey would ever be able to learn to play music herself, but I want her to be able to access music easily, which with today's technology, is quite easy.  I want her to maybe learn the names of types of music, and to learn musical terms, and to just take her love of music as far as it will go.

I think we have long put a lot of store in this country in a well-rounded education.  Everyone learns a little of everything.  That model needs to be looked at.  Not everyone needs to learn everything.  I would guess that if we let kids, all kids, pursue their strengths more, we'd be better off as a nation.  The time spent teaching a kid who has no interest in or aptitude for math algebra is time that could be far better used letting that child pursue what they are good and love to do.  Or if the child adores algebra and is great at it, don't require them to spend large parts of their day engaged in learning something they will never master and will never enjoy.  I'm going to try to keep this lesson in mind when looking at Janey's education after she finishes elementary school.

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.

Too Healthy?

A few days ago, I got a call from Janey's school nurse.  Janey has a red area on her face, which I had been assuming was dry irritated skin, but the nurse (who is fantastic) thought it might be strep.  She said a lot of kids in Janey's class had recently had strep which first presented itself as a red face race.  So Tony got Janey early from school and took her to the pediatrician's office.  They did a rapid strep test, which I wasn't too surprised was negative, and they said that they did think it was just dry skin.  I wasn't surprised not because I doubted the nurse, but because Janey almost never gets sick.

When Janey was younger, she did get sick now and then, but not as much as most kids do.  She has some fevers that would come and go, and she occasionally had colds, but never the illnesses her brother had, like croup or pneumonia or roseola.  Starting about three years ago, she started to basically never get sick beyond a very mild cold.  Sometimes, half her class would have whatever was going around, but Janey stayed steadfastly healthy.  She's had only one ear infection ever, and last year she missed only one day of school, for a non-illness reason.  And this is a girl that despite our best efforts, do not keep her hands out of her mouth, does not wash her hands unless we are there making her, does not practice on her own basic sanitation things that are recommended to keep someone healthy.

My pediatrician has noted Janey's lack of illness, and said she's probably in the 98% or 99% percentile in terms of healthiness.  He also noted it's something he sees fairly often in autistic kids.  I have my own theory about it, which ties into my favorite autism cause theory, that's it's an autoimmune disease.  I think Janey's immune system is hugely overactive.  I'm not a doctor or medically trained, so I could be extremely off on how these things work, but it seems that she attacks any potential germs with way more than the normal force.  And I would not be at all surprised if that is what happened when she had her big regression.  Somehow, her immune system went wild and attacked her brain.  

Whatever the reason for Janey not getting sick, it's a nice thing.  I am knocking on wood all over the place here, as I don't want to tempt fate.  I can't imagine how Janey would deal with a major illness.  She would have no real idea why she was in pain, and she would not at all like to have to take more medication.  But if getting a little more sick a little more often would have meant that Janey wouldn't become autistic---well, I think that would have been a fair trade-off.  But those aren't choices we make---they are made for us.

Low Functioning Autism and the 1 in 50

Low Functioning Autism (which is often abbreviated LFA) isn't a pretty term.  I guess there are others that can be used, like classic autism or Kanner's autism.  I've also heard non-verbal autism used as a synonym, but I don't like that, as Janey is low functioning but does speak, although not really often meaningfully.  LFA is also a hard term to find a definition of.  I was trying, just now, and couldn't find a hard and fast one.  Sometimes IQ seems to be the criteria used, with an IQ under a level I saw quoted as 80 in one place and 70 in another as the cut-off.  It seems like LFA is one of those things you know when you see.

And why am I thinking about this today?  Mainly because of the statistic of the day---that now it's said that one in 50 school children in the US have an autistic disorder.  Frankly, honestly, that statistic annoyed me.  It annoyed me because it seems it must use a hugely wide net when saying exactly what an autistic disorder is.  It just doesn't make sense.  Janey goes to a school that is an inclusion school, and each classroom has some children with disabilities.  Her school might be one of the rare ones where that one in 50 makes sense, for that reason.  But although of course I don't know official diagnoses of other kids, I can say just from being around the school that Janey is lower functioning than most any other kid with autism there, and that some of the kids I know are considered on the spectrum can do things that I doubt Janey will ever come close to doing---writing well, doing advanced math, talking in conversations---things like that.  Someone without knowledge of the huge range that autism encompasses will not understand that statistic.  They might think all kids with autism are what would be called high functioning, and think it's just a fashionable thing to have your child called, to get them a little extra help.  Or they might think all the kids are like Janey, in which case you would think there would be widespread alarm.  If one if 50 kids were like Janey---well, our special ed systems would be completely and totally overwhelmed.  All I can imagine that must be meant by the one in 50 statistic is that one in 50 children at some point in their life showed some autistic characteristics.  In fact, I'm pretty sure that somehow my older son, who has not been on an IEP for 8 years and who has already been accepted at 5 colleges, including Brandeis, is considered one of those 50.  The differences between Janey and him are so vast that to include both of them in that statistic makes the statistic pretty much meaningless.

I tried to find a statistic on how many children have LFA.  I couldn't.  I think that would be a very useful number for the government to have, in order to plan for the future.  Many of the kids in that 1 in 50 are not going to require lifetime care.  But the ones with LFA are, barring the extremely rare "cures" and miracles.  I think part of the reason there aren't more numbers and isn't more information out there about LFA is that it is far less studied than HFA.  It's hard to study Janey.  She's not going to answer your questions or cooperate with tests or refrain from freaking out if you want to do something like an MRI with her.  The one study I enrolled her in was a bit of a disaster, as when they tried to test her, the testers seems stunned by the reality of her.  They essentially gave up on testing her half way through.  I'm sure that's not an uncommon outcome.  It's a lot more interesting to test quirky verbal kids, I'm sure, than kids who scream and don't answer and aren't at all with the program.

Here's how I'd define LFA.  Please note this is only my own idea of a definition, not anything official!

Kids with LFA either don't speak or they speak mainly in echolalia or with simple, scripted requests.  They are not able to learn academically without a huge amount of help and support, and even with that, they will never be able to access a regular curriculum.  They require around the clock care, and must always be under supervision, as they do not understand basic safely protocol.  They have limited self-help skills.  They often have trouble regulating their emotions, and may cry or laugh for no obvious reason.  Their range of interests is very limited.  It is extremely unlikely they will ever be able to live on their own.

If that sounds pretty grim, well, it is.  I didn't sugarcoat it.  There is not room there for the good parts, although every child in the world, including those with LFA, has good parts!  But I think it's important, crucially important, for people to understand the challenges of being a family with a child with LFA.  Autism casts a wide net.  Today's statistic proves that.  But I'm starting to think having that wide a net is not serving the needs of those under the net.

The less glamorous side of autism

You out there in non-autism land might be thinking "Wow, this autism gig sounds like something cool!  A quirky interesting kid, and one with the hippest condition out there---one all the celebrities are into right now!"  Well, of course there's a lot of glitter and excitement in our world, sure, but it's not all red carpet parties and fascinating breakthroughs.  No, there are times that autism is, well, just a bit less than glamorous.

Today was one of those times.  There was no school here, due to Evacuation Day.  What, you've never heard of Evacuation Day?  Why, it's every single March 17th!  Isn't that ANOTHER holiday, you ask, the big Irish one?  Well, yes, but it's just PURE coincidence that Boston and surrounding towns celebrate an obscure Revolutionary War era holiday on St. Patrick's Day, and give kids and city employees a day off for it!  Today, actually, it became a Monday holiday, as Evacuation Day was yesterday.  And no, I didn't get my cards out in time, so you've have longer to wait if you've been waiting for my family Evacuation Day letter.

Janey woke up grumpy and crying.  I managed to get her happier with a long bath and a watching of Taratabong, a great Italian-made preschool music show that is on Netflix.  Later, I took Freddy and her to get a book Freddy needed, and we went to Five Guys for lunch, a place that has often freaked Janey out, but we did the trick today of getting there just as it opened for lunch, so it was empty.  Janey was perfect there---she did feel she must dance to the music in the background, which she always notices, but she didn't bother anyone as no-one was there, and we ate well.  Then home, and Freddy watched Janey for an hour so I could have a little rest.  So far, not a bad day.

Then, when my break was over and Freddy had gone to play video games on another floor, I was sitting on one couch reading and Janey was sitting on another watching her new favorite video, Mickey's Magical Christmas (she doesn't mind out of season videos at all).  All was quiet.  I must have been caught up in the book for a minute or two, but then looked up at Janey.  My first thought was "How the heck did she get into chocolate frosting?"  My next thought was "We don't have any chocolate frosting around"  My third thought is unprintable.

Janey was covered---her hands, her face, her hair---covered.  Mind you, this was while I was IN THE ROOM with her.  She had silently reached into her pull-up and pulled out the contents.  I screamed "WHAT HAVE YOU DONE?"  I know I shouldn't yell, but I defy anyone on earth to not scream in that situation.  Then I took hold of both her elbows, to prevent her from touching anything, and let her to the bathroom.  It is crucial to note here I threw on my shoes, which were right there near her.  I gave her a bath---actually, 3 baths, because the first one got pretty disgusting in a minute.  I had to take her out, empty it, clean it, disinfect it, do a second bath, and then repeat steps.  When done, I threw back on my shoes and walked her out to get dressed.  It was then I noticed my feet, and indeed my shoes, and the floor, were covered with, well, you know what.  Evidently her accident had somehow gotten into my shoes, and I walked the shoes all over.  The floor near the couch was still a disaster area, but that had to wait while we went back to the bathroom and I locked the door to keep Janey in and took a shower, and then cleaned my shoes, and then washed everything again, and then went to the living room to clean that up, and then scrubbed my hands again, and then sat down and cried.

Last summer, I thought Janey was almost toilet trained.  Yesterday, she used the potty very nicely several times.  However, obviously, she is not totally trained.  Not even close, really.  Thank goodness, she doesn't seem to have ever done this type of mess at school.  She holds that for home.  Which in itself shows she does have some control.  Once I was done crying, I started the attempt to make her understand.  She repeats the lines very well---"We NEVER touch our stinkies!  That's too silly!  That's naughty!  That makes Mama sad!  I'm sorry!"  Yeah. I don't know why I bother with the lectures.  I guess they make me feel better.  She is great at repeating things.  That doesn't mean she gets or means a word she is saying.

Things are getting better with Janey.  Tony and I both think so.  Very, very slowly, overall, things are getting better.  But it's still very, very tough with her.  I have to believe some day she will be trained completely.  I have to believe that, because I don't think I could much stand not to think it.

Autism in public places

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

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

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

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

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

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

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

Puzzle Piece Autism Symbols

Recently, a friend mentioned seeing someone with a puzzle piece necklace, which he found out was a symbol of autism support.  It set me thinking about the puzzle piece symbol, which I see more and more---on car magnets, in jewelry, on signs---all over.  And it made me wonder why I have no desire to wear the puzzle piece in any form, or put it on my car, or, to expand, to make it my Facebook picture or, to expand even more, why I am not a more vocal advocate for autism, outside of this blog.

On a very basic level, I don't wear autism jewelry because I don't wear any jewelry, except my wedding ring.  I am not very good at accessorizing, to say the least.  I don't wear jewelry, I don't wear makeup, I don't dye my gray hair, I don't dress very snazzily.  I'm just no good at those things.  I wish I were, but despite having been "made over" many times, I wouldn't have the slightest idea how to put on makeup, or how to put together a good outfit.  I let my pierced ears grow back years and years ago.  You are lucky if you see me with my hair in a pony tail.  That's about how far my fancying up goes.  I've always wondered if it's my own disability---the inability to coordinate, to be fashionable, to do the basic things like makeup or nails that seem to come naturally to every other woman on earth.  It might go along with my horrible handwriting or general messiness.  There are parts of my brain that just don't seem to completely be with the program.

But on a deeper level, there are probably other reasons I don't wear autism symbols.  Part of it is a lack of wanting to draw attention to myself.  If I wear a symbol that not everyone recognizes, it would lead to questions, and questions would lead to explaining.  For someone that likes to blend into the crowd most of the time, that's not a sequence I'd like.  But another part of it is a stubborn feeling that I don't want to make autism my signature cause, my main point, the center of my life.  My friend that saw the puzzle piece had a good theory on that---that in a way, I'm practicing autism acceptance.  If I were to point out the autism part of my life constantly, it's not integrated into my life.  It's not accepted as any other part of my life.  It is pointed out and stands out.  I want Janey, and autism, to be a regular and normal part of life around the community, not a cause.

I also am always aware I have three children, not just Janey, as well as a husband and other family.  My boys both had asthma, which Janey thankfully does not.  Freddy still has it, and is a survivor of an extremely serious attack he had as he turned 10.  Tony is an insulin-dependent diabetic.  I have a non-functioning thyroid, and am a pre-eclampsia survivor.  William was a preemie. My sister is a cancer survivor.  There are other health issues that I have very strong feelings about, and if I wore symbols of all of them, I'd probably be a little gaudy looking.  To single autism out feels wrong to me.  It affects our lives greatly, but it is not life-threatening, thankfully.

And yet, I feel a sense of kinship when I see someone with a puzzle piece worn.  I feel connected when I see a car with a puzzle piece magnet.  I am glad there are others out there with autism in their lives, and I am happy to see the symbols of that community.  I guess it's a case where everyone shares in a way they feel best about sharing.  I write this blog to share with and connect to the autism community.  Others advocate more publicly, and work harder to educate the wider community, the community at large.  Others are at a stage where they are concentrating completely on their own child with autism, and that too is completely understandable.  Having a loved one with autism doesn't make us all the same, and we all do what we can do.  That's the only way to get through the autism life, and in fact, life in general.

Janey's sound

Janey has a signature sound.  I've mentioned it in the past.  It's hard to put into writing, but it's something along the lines of "AHHHHahhhAHHHHahahaAHHHH"  It's a loud sound, and not musical, although she is so often singing and very sweet sounding.  This sound, though, is guttural.  She makes it mostly when she's in movement, walking or running or jumping.  When she is watching a video or in the car, she doesn't make it.  It's like it's a motor that gets her moving.  She seems also to make it more in public than at home.  It can be used to locate her.  Often, in a store, Tony will walk around with Janey while I shop, and if I need to find them, I just listen for the sound.  At afterschool, when she has been called to the office to come home, I can hear her being brought to me by the sound.

 We are a fairly loud family.  My husband often sings or whistles to himself, and the boys and I joke about knowing he's on his way when we hear his whistle.  William plays guitar a very lot, and often carries his guitar around the house, so music announces his entrance.  When Freddy was little, he had a sweet hum he hummed while playing.  I don't think I have a sound, but maybe I do and don't realize it.  So Janey might come by her sound naturally.

I worry, though, about how the sound instantly signals something is odd about her.  If she was just walking with us, holding our hand, she might not seem much different than any 8 year old at first glance.  You'd figure out pretty quickly once you tried to talk to her that she was different, or once she started jumping or running, but you'd have the moment first of just seeing her as a "normal" kid.  The sound, though, make it apparent even before you actually see her that she is different.  As she gets older, I see reactions to it, people looking at her, and sometimes looking annoyed.

I have no idea how to keep Janey from making her sound.  It's not something I've seen addressed in anything I've read about autism.  I know I've heard a few other kids with various special needs that seemed to make noises, but none quite like Janey.  I doubt she has any awareness of what she sounds like.  I don't think it would be at all easy to stop her from making the sound while letting her understand that talking is okay.  There's no way to explain distinctions like that to her.  She simply wouldn't get it.

And does she need to stop?  Since she doesn't make it usually except when moving around, she is not doing it, I don't think, in class or at times that there isn't other noise around.  It's loud when outside, but other kids are yelling or talking loudly outside, and she's no louder than them.

I think the sound is not going anyplace.  It's part of her.  It's more my issue than hers, as is the case with so many things.  I wish she didn't make it, because it sounds weird.  That's the bottom line truth.  Maybe in some little way, I love the brief moments when she can pass as a typical kid, when people can see only a sweet, pretty little girl, and the sound stands in the way of those rare moments.  The sound isn't hurting her, it isn't hurting others, it's really a non-issue, but still, I admit, it bothers me.  I need to work on that, not her.

Three Great Days

The last three days with Janey were some of the best days I think I've ever had with her.  Just like her tough times, there is no rhyme or reason to the good times---they are just as unexplained and unexpected as the tough time.  Friday had the setup for disaster.  We were only supposed to get a little snow, but by very early in the day it was evident we were getting much more than predicted.  However, Boston only likes to call snow days the day before, and so although we here wound up getting probably 18 inches of snow, there was school anyway.  There was no way I could drive in that, and even though Tony would have driven Janey, at the time school was starting, the snow looked blizzard-like, and so I just kept her home.  I have to admit I was dreading a day with her stuck in the house, outside her regular schedule and alone (the boys went to school)  I never would have guessed what a great day we had.  She was happy, calm and content the whole day.  She cheerily followed me around on my household routine, she watched a few show but didn't get upset or obsessed about them, we cuddled and sang and listened to music.  I wasn't even drained at the end of the day.  It was amazing.  The weekend was just as good.  She was cheerful almost all of the time.  Tony and I had a lot of moments of the kind of thoughts we only have when she's that happy---how at those times, she's probably easier than your typical 8 year old.  She is thrilled to go with us to the thrift store, or on a ride just to get gas for the car.  She's excited by the idea of bacon for breakfast as much as if we had given her 10 presents.  She is overwhelmed with happiness just to hear her favorite song played.  She can be such a joy sometimes.

I have been trying to figure out what made her so happy these days, if only to be able to reproduce it.  The only thing Tony and I have been able to figure out is she likes us to be around and giving her attention, but not forcing attention on her.  On Friday, I didn't sit down and try to make her listen to books, or work on papers.  I didn't suggest new shows to watch, or try to do special projects.  I washed dishes while we played music, I sat next to her while she watched her shows, I talked on the phone while she did her jumping around and her songs near me.  I didn't try to work, but I didn't work on her.  We were just together.  Tony has noticed the same thing.  She doesn't want us to be doing things away from her, like on the computer or busy with some intense project, but if we are talking to her, near her, we can be kind of parallel playing with her.  It also makes a big difference if we are in cheery mood ourselves.  Janey is intensely tuned into tone of voice.  I think it goes along with her ear for music.  She might not get what we are saying, but if we sound tense or upset, she gets tense and upset.

On days like the past few, we are not scared of the future.  We can picture a future where it's just the three of us---the boys with lives of their own, and Tony, Janey and I being a unit---the child we will always have.  It's not a thought that fills us with dread on good days.  There could be worse things than having someone to delight in the small things always with us.  Of course, there are other days, as anyone who has read much on here, that I don't feel that way at all.  For all I know, tomorrow could be back to one of those days.  But that doesn't take away the happiness of these good days.

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

The laughing, oh, the laughing...

When I picked Janey up yesterday, she was in a quiet mood.  I didn't put music on in the car and I didn't try to talk to her, as she seemed to just need some down time.  That lasted about half the car ride home, and then she started to laugh.  And within moments, it turned from laughing to THAT laughing.  The manic laughing.  The laughing that I will go out on a limb and call the insane laughing, although that will forever brand me as a Bad Autism Mother.

One of Janey's teachers once told me she found the endless laughing tougher to take than the endless crying, and I loved hearing that.  It validated a feeling I've often had.  I don't know if I find the laughing tougher to take, as I am particularly sensitive to crying, but the laughing is in a lot of ways more unsettling.  Crying, although it's horrible to witness and heartbreaking, is understandable in a way.  We all have sad feelings, and Janey doesn't have a lot of ways to express those feelings, and she gets very frustrated, I am sure, and she cries.  But the laughing?  It seems to come from no-where.  It isn't in response to something funny, or anything funny I can see.  It just seems like some brain artifact, something organic and something scarily wrong.  I'm being very, very frank here.  It's endless, like a hearty laugh over a funny TV scene, but extended for hours and hours and hours.

Last night, it lasted until Janey went to sleep, from about 5 to 8.  Whenever she wasn't actively laughing, she was making her AHHHahhhAHHHahhh sound.  We were having a tense night, trying to get things completed we needed to finish for William's financial aide applications, and it was very, very hard to concentrate on anything with the laughing and sounds.  You can at least try to comfort someone that is crying, but when they are laughing endlessly, what do you do?  I helplessly ask "What is funny, Janey?" but of course she doesn't answer.  I ask her if she can be a little quieter.  Again, just asked for something to say, as Janey in no way gets that or responds.  Freddy finally can't take it any more and tells her to shut up.  That is the kind of thing a sibling can say, but a parent can't.  She ignores him too, of course.

And I feel ridden with guilt writing about this.  How can I be so cruel as to be annoyed with Janey for LAUGHING?  And I respond to myself---let anyone try it.  After a while, they will lose all their understanding, their acceptance, their noble determination to be the right kind of autism mother, the kind that only celebrates the differences, that doesn't judge, that is endlessly understanding and calm and perfect, and they will just feel like screaming.  I challenge them not to.  God durn it, I accept Janey, I love her, I do my best, but I am not perfect.  And the laughing, oh, the laughing....

Dreaming Small

I don't dream much about Janey.  I don't dream much about my kids at all, or my current life, although I dream all night every night.  In my dreams, I've gone to high school and college about a thousand times over, sometimes vaguely aware that I am redoing an experience.  But the last 20 years of my life are barely there in my dream world---I have no idea why.  Last night, though, I had a dream about Janey, and it struck me in how mildly it changed reality.  I am dreaming small lately.

In the dream, I took Janey to a very upscale kids clothing store.  I wanted to get her some fancy clothes for a party.  I held her hand constantly, as I would do in real life, and we looked at the rather meager selections the store had.  I noticed there was an upstairs, and so we went up there.  It was in the form of a loft, completely open to the downstairs with no railing or anything, but that didn't seem to bother me.  I found some promising looking clothes, and Janey found a dollhouse and some play teacups.  There was a slightly older girl there who started playing with Janey, and so I let my guard down.  So much so that when somehow my parents showed up and needed me to walk about a block away to help them with something, I just left Janey there.  When I got back, she was fine, but all dirty and without her shoes.  She said to me "We went out to play in a meadow"  Even in the dream, I realized that was a pretty great sentence from her, and praised her for it.  And that was it, except for a long drawn out part of looking for her shoes and the nasty shopkeeper being annoyed I had lost them.

And I wonder---why don't I go all out in dreams?  Why isn't Janey talking fluently, not autistic at all?  The Janey in this dream was mostly the real Janey, just a better talker, and even then, the dream world knew that was an unusually good utterance.  Of course, there's no answer to those questions.  Nobody understands dreams.  But if there was a meaning, I'd say it was one of acceptance.  Janey isn't going to change drastically.  The little changes are what I hope for now, the little triumphs.  They make me happy.  Her autism is a basic part of her, even in my dreams.

The stunned look

When I picked up Janey on Thursday from afterschool, as soon as I walked in the door, I saw a look on many faces that I was very familiar with.  It's a look I've seen on my own face, on Tony's face, on almost anyone's face that has been around Janey during one of her extremely tough spells.  It's the stunned look.

Janey had had a terrible day at school and afterschool.  From the various reports, she scratched her neck in anger until it was all scratched up, she screamed her blood-curdling scream off and on for hours, she flung back her head while riding the bike she loves to ride usually, making riding it unsafe---she just plain melted down all day long.

When these storms come with Janey, there is nothing anyone can do but keep her safe, as the afterschool director said.  After all these years, they are still stunning for me to watch, and so I understood those looks.  They aren't the regular Janey---thank God.  Even though the people at school are all with Janey a great deal, they haven't all seen many of these spells, and some probably not at all.  And so they get the look---I would say it's close to the look you get after witnesses some scene of horror, almost.

The amazing people at school dealt well with Janey during this spell.  I wish I had more to offer them for ideas.  There really aren't any ideas or helpful things.  You just have to ride it out.  I have no idea what was up with her.  We all worry she's sick, or something is hurting her.  She screamed a huge part of the ride home, a large part of the evening, and then slept well and got up fairly cheerful, or I would have considered keeping her home, just to give everyone at school a break, although people always tell me I don't need to do that (thanks, Amy!)   But she was mostly recovered.  She was off and on at school, from reports, but nothing like Thursday.  She has a few screaming times last night, but actually ended the night snuggling in my lap, which is pretty rare and was wonderful, and she woke up early this morning as cheery as a girl can be.

It's hard on everyone when Janey gets a spell.  That's why the look comes up.  You think you're getting her, you are understanding her, she's developing a routine, things are going well.  And then out of the blue---she's screaming, she's scratching herself, she's banging her head, she's turning red with fury and frustration, and absolutely nothing you say or do can help.  It defies the logic we like to think we have as parents and caregivers.  It's like witnessing a bad storm.  You just get stunned.  And it passes, and you relax, and think again you've got a handle on it, and then it stuns you all over again.  If only I could understand you better, Janey, and help you avoid those storms.