Autism on the Airplane and the questions it raised for me

By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown.  If you haven't, here's a link.  I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well.  I'm not going to give an opinion there, because I don't have one---I wasn't there.  I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group.  Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.

What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.

If Janey is having a severe meltdown, she is very capable of hurting people.  And she has.  The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers.  If I ever have a worse moment than that, I hate to think what it might be.

We don't always have a warning that Janey is about to melt down, or much of one.  And even if we do, we can't always fix the situation that is causing the meltdown.  I do feel a responsibility to the people around Janey to keep them safe.  So---what does that translate to?  Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out?  If this is the solution, Janey wouldn't go to school.  She wouldn't go to stores.  She wouldn't go anyplace.  I can't feel, right now anyway, that that is the correct solution.

How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten?  I think I have a responsibility to take reasonable precautions.  I would not let Janey run around free at a playground full of smaller children.  She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids.  If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids.  When Janey is out of the house, she is under the direct supervision at all times of an adult.

So, what if I got into a situation with Janey like the one on the plane?  What would I do?  I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying.  I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying.  I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did.  What do I do?

I don't have an answer to that question.  I'd of course try to keep her from hurting anyone.  I'd try to calm her down.  But she would attract attention.  It would be a scary scene.  I don't know what I'd do.  I really have no idea.

Most kids with autism are NOT like Janey. She is not the majority.  But other kids like Janey do exist, to be sure.  And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out.  It's a question I personally need to figure out.  Janey has much to offer the world.  She is amazing in so many ways.  But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.

Autism Mothers Aren't Chosen

If you are the mother of a child with autism, the news lately is a little tough to hear.  I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so.  And that is my point here.  Mothers of children with autism are not a homogeneous group.  We are not a single type.  We are not chosen.  We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism.  But aside from that, we are all very different people.  We react differently to many things in our life, including the stresses of raising our children.

When I read about the mothers that break, I feel like I am supposed to have some inside insight into them.  I don't, really.  It is like when I read about any crime or horrible event.  I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.

Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed.  We eventually found her guilty of manslaughter.  I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother.  She was not a demon.  She made extremely poor decisions, and she paid for them.  But the experience left me realizing that we usually have no idea what life others live.

The only autism mother I can truly speak for is myself.  And I can only speak for myself at the moment in time I'm in.  I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape.  I thought of getting in the car and driving away and never coming back.  I thought of escaping into death, my own death.  Those thoughts were fairly rare, but they happened.  What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself.  That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.

Autism mothers aren't chosen.  They are parents.  The idea that somehow they are special, different, miracle workers---those are dangerous ideas.  They are dangerous because of the expectations they create.  IT IS NOT OUR JOB TO FIX OUR CHILDREN.  That thought is what I think causes more despair among parents of children like Janey than any other.  We all have read about amazingly devoted parents who "cure" their kids.  Maybe this has happened, once or twice in history.  But most of the time, the children that get "cured" would have done so anyway.  I truly believe this, with all my heart.  I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables.  I didn't cure him.  I am not going to cure Janey.  It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.

When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us.  When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided.  It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different.  Please remember that when you hear the news.

Tired of feeling this way

I haven't written in a few days, because I was going with the old saying---"If you don't have anything nice to say, don't say anything at all."  I don't really have anything mean to say, but I don't have anything nice to say either.  I've been depressed for a bit now.  There are days I feel better, and days I feel worse, but overall, I've had my particular brand of depression, which mostly involves having very little energy and sleeping a lot. And yes, I have a doctor's appt. next week and I will talk to her about it, but it's not the kind of depression that I think much can be done about, besides things I've already tried or am already doing.  It's situational depression.  I'm depressed about specific things, and of course high on the list is Janey.

Not Janey as a person.  I'm not depressed she is herself.  I'm depressed, I think, because I feel like I've missed some boat in helping her.  I think I've been reading too much about autism---just following news leads in my Google news section about autism.  I missed the early intervention boat on her.  It doesn't help me feel better about it that she wasn't autistic then, or if she was, it was a pretty subtle thing.  I remember her PT saying how amazing it was how social Janey was, how much she talked.  I know then she eagerly greeted the PT every day.  I don't think about things like that a lot.  Sometimes I like to almost forget those first 3 years, to tell myself that Janey NEVER could talk like that, because lately, despite all the years that have passed, her horrible regression is upsetting me more than it has in a long time.

The only reason I can figure this is the case is that Janey seems to be in a plateau right now, or maybe even another regression.  Her talking is not good lately.  She is saying less and less, and what she does say is getting turned into shorthand a little.  For example, the phrase I hear most often at home is "Snuggle on Mama's bed!"  It's her response to any kind of upsetting thing happening---a scary part in a show, a reprimand of any kind, or just some impulse from inside that bothers her.  But now she's mushing the phrase together, just looking at me and saying "nuggmamaba" or something like that, like that whole phrase is too much work.  It's like every word costs her a lot of money, and she's a saver.  For years and years and years, when I leave her in the morning at school, she gets told to say goodbye to me, and she just about never does it spontaneously.  Once she's reminded, she'll say "Bye!"  Then someone will say "Bye WHAT?" and she'll reluctantly say "Bye, Mama!" or something Bye someone else, if she's not in the mood to remember the right name to call me.  And lately I'm just wondering those useless questions---WHY?  Why is it so so so so hard for her to learn things?  Why does her talking never really progress?  Why if I look at reports or my own blog from 3 or 4 years ago, is her talking at the same level now it was then, or less?  Why does she still often have crying spells where something is obviously badly bothering her but she can't tell us why?  Why does she not progress?  WHY ISN'T SHE GETTING BETTER?

Isn't it supposed to work that way?  Isn't even autism supposed to follow those rules---you start at one level, and with a lot of work, you get to the next level?  And Janey doesn't.  Or she might in small ways, but not big ways.  And around her, other kids with autism do, other kids with other delays do.  I am confident she has the right teachers, the right therapists.  I am even confident, in my better moments, she has the right parents and brothers, that we are doing the right things, the things that should make her able to learn.  After all, we raised her two brothers so far rather successfully.  I know she has autism, I know she has retardation.  But that should not stop her from being able to learn.  Or should it?  I guess I know sometimes it does.  I've read the rare book that does admit that---that's it all not a guarantee in any way, that some kids don't progress.  But, and I'm letting the inner thoughts out here---why me?  Why Janey?  And of course, the answer is Why Not?

So probably I should have taken that good advice and not written if I don't have anything positive to say.  I'll think of this post as what I guess blogs can sometimes be---a diary other people can read, if they are in the mood to get depressed.  And I'll buck up soon, I promise.

What I fear most

This news piece illustrates what I fear most. A non-verbal autistic little girl, abused on the school bus by a sadistic aide. I want to be sure to say I am not saying anything against bus drivers or aides. My bus driver growing up was one of the finest men I've ever known. The aides at Janey's school---I can't say enough about them. They are wonderful people. What was done to this child was done by someone who, scarily, could be anyone. There are sadistic people out there. And there are people who might not be at all sadistic, but for whatever reason are in jobs they should not be in, people who are not able to deal with disabled children. It's not a job for everyone. Autistic kids (like all kids, but to extremes) can be incredibly frustrating. I would hope anyone caring for such a child would have that trait that would make them not able to hurt the child, no matter how frustrated they are---the love of the child. The love that makes you stop and take a breath and not do something that will hurt the child. I am blessed to have people like that caring for Janey. But I fear the future. I don't think my fear is unreasonable. Janey most likely will not be able to say if someone is hurting her. She can be hard to deal with. I can see her being this girl on the bus. Or the boy at the school Janey is slated to go to some day that was abused. It just takes one person, one moment of losing it, or giving in to horrible impulses, or taking advantage when you think you can, to hurt a child.

I have to have faith to let Janey leave the house. I have to trust that those around her love her and care for her, and will know if they need a break, and will be watching her always, and noticing who else is near here. I do have that trust of her school. But she will be in other schools, some day, or other situations. It's enough to make me want to keep her with me always, but I know that doesn't serve either one of us best.

It's probably harder to do anything about the sadists, as the woman charged here sounds like. I will say I wish she'd gotten a hundred year prison sentence, instead of the slap on the wrist it sounds like. I hope she burns in hell. That's not my usual kind of talk. But it's what I feel. However, what I think something CAN be done about is people that for whatever reason find themselves in over their heads. There are people that are not going into it all planning on hurting children, but they might find themselves handling a child who has cried for hours, or is not toilet trained and has yet another accident, or who might be very tired on a certain day. If that internal guard is not on, the one that I think can only come from truly loving the child and empathizing with them, a person that might never see themselves as an abuser could become one. I hope that all who care for autistic children are treated decently, and are trained well,and paid well, and screened well. If they are overwhelmed, I hope they will speak up, and get a break. If they find they no longer think they can do the job, I hope they will do the right thing and find another job.

This is a raw post, because of the raw feelings reading that article brought up in me. I'll close by saying a million, trillion thank yous to those who are so wonderful to Janey. I am more grateful to you than I can ever say.

Autism in girls article

Here's an article about how autism differs in boys and girls. There's been a lot of news about autism out there the last few days. I try to keep up with it to some extent, although I avoid getting obsessive about it. Articles that talk about autism in girls, of course, capture my attention.

A few interesting points in this article----It talks about how with a higher "degree of cognitive impairment" (it seems forbidden to say such things are retardation or low IQ), the ratio changes from 5 boys to 1 girl to something closer to 1 to 1. Autism doesn't hit girls as often, but when it does, it often hits harder. The article speculates that this might be because in higher functioning girls with autism, their innately high level of social skills masks the signs. I can see how that might be. The article also says girls on the spectrum have less repetitive behaviors and less sensory irritability. This fits Janey. She does a lot of repeating of phrases, but not a huge amount of repetitive behaviors like spinning. She has a pretty low level of sensory irritability, too, except for certain sounds. She never minds things like sticky hands or being barefooted. She actually probably seeks out sensory things, which I know can be an issue too, but a different kind.

I wish I could find a study to enroll Janey in specifically about autism in girls. I'd love to have our family be part of learning more about this subset of autism.