What does Janey think about?

Of course, we never really know what anyone else thinks about.  But with Janey, I have no inkling at all.  She never refers to past events.  She never tells me what she does when she's not with me.  She has never told me a dream.  She's never told me about a disappointment she felt.  She's never said what she hopes the future holds.  She's never even told me the little things, like what her favorite color is.  Her mind is a mystery to me.

I get glimpses of Janey's mind only by her telling me her immediate wants, and even those are limited to a very few categories---ones relating to food, videos, going outside or in the car or wanting someone to lie down with her or go away from lying down with her.  I know what foods she likes and what movies she likes.  But I don't know if she likes school.  I don't know if she likes certain kids her in class better than others.  I don't know if she wishes she could talk more, if she wishes she could read.  I have no idea.

I often look at Janey's face, trying to figure out what is inside, in her mind.  So often, her face doesn't let those secrets out.  She so often has what I think of as her reserved look.  Some people call it an autistic look, and indeed, it's a look that I think is common with a lot of autistic kids.    It's a guarded look, a look that seems to be designed to keep her safe from being asked to do things she doesn't want to do, safe from well-meant but invasive demands--- "Look at me!  Tell me with words what you want!  Tell me about school!  Answer me!"  It seems to be a way she retreats into herself, closes herself up.  Maybe autism is the ultimate way of wanting privacy---she keeps her counsel.  But oh, how I wish she would, or she could, let me know what she is thinking, even just a little.

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

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

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

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

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

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

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

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

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

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

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.