The tension of a guard never fully let down

The last few weeks, I've been very tense.  It's strange, because, as I've written recently, Janey has overall been fairly calm.  She's had an increase in crying the last few days (jinxes are real, as all Red Sox fans know!), but my tension predated that behavior spike.  As I lie awake at night lately, I think "Why in the world are you so tense?  Why can't you relax?"  Last night, I answered myself.  I said "Think about the last eight years of your life"

In the last eight years---well.  Janey had her horrible regression and was diagnosed with autism.  We had countless days of all-day crying and screaming, many nights with no sleep at all.  The school our children had been attending for many years and the school I thought Janey would go to until age 22 decided they could no longer handle her level of disability.  After about six months at her new school, she went into a crisis and wound up first boarding at Children's Hospital for six unbearable days and then spending three weeks in a psychiatric hospital.  Then, the next year, after three days of increasingly severe symptoms, she was diagnosed with a burst appendix, had emergency surgery and then weeks and weeks in the hospital with complications.  Last January, a bad flu and pneumonia landed her back in the hospital for a few days.  Top that all with life's regular stresses---two sons in college, financial challenges, the everyday this and that and the other thing....well, let's say that if I wasn't tense and stressed, it would probably mean I hadn't been paying attention.

But why can't I relax on days when everything seems fine?  It's because my guard is never, ever fully down.  A day that seems just fine can turn on a dime.  I can get a call from school that Janey is sick, or having a behavioral crisis.  Janey can come home screaming and biting.  We can have one of our occasional sleepless nights.  Janey can get a fever, not be able to tell us why and end up suddenly critically ill.  We can have a day where she is as sunny as she can be suddenly turn, for reasons we don't understand, and just like that we are dealing with a level of chaos some people might not see in a lifetime.

Stress in parents like ourselves is something that is very hard to understand unless you've lived it.  It's the reason sometimes it might seem like we overact to small things.  It's the reason we are not always quick to be excited about what seems like good news.  It's the reason we are often not ready to try new things, go new places, take any risks.  It's the reason some days I have the near overwhelming urge to get into the car and drive---drive far away, away from my life.  I can't and won't ever do that, but if I did, the thing of it is that I am sure the stress would follow me.  If Janey someday lives away from home, I know from hearing about others with autistic kids living away from home that you still can't ever relax.  Things can fall apart fast, wherever your child is.

And so---what can we do?  We can be easy on ourselves.  We can accept that stress, tension, worry, all those, are always going to be part of our lives.  We can treat ourselves when we can to life's little pleasures, without an ounce of guilt.  We can drink our coffee, play our games of Scrabble, watch our mindless TV, read our escapist books.  We can call friends and laugh like crazy over the phone.  We can let sleeping dogs lie, let our child watch that video for the 100th time while we sit and do nothing.  We can stop thinking, pretending and having to present an image that our lives are more in control than they are.  We can accept that we have in some ways been dealt a challenging card, and admitting that doesn't mean we don't love our kids, that we aren't good parents.  We can support each other.  And we can keep on going.  That last one isn't a choice, but some days, it's all we can really do.

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits again...it's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.

Thoughts about depression

I don't know if depression is the right word for what I often feel. It's not depression of the kind that comes out of no-where. It's depression that sneaks in quietly, evaluates the facts and settles in for a long stay, never completely taking me over but eating away at the edges of my mind. A quick search for "autism" "mothers" and "depression" turned up this article. It's 5 years old, but not much has changed in the world of depressed mothers. I like it very much, because it politely says what I often think---it's depressing to be the mother of an autistic child because it's just plain a very, very hard life with no relief in site. It's not some complicated to figure out thing, as the study mentioned in the beginning of the article thought. It's what the author of the article says---the social isolation that having an autistic child breeds, the lack of sleep, the monetary problems from not being able to work or from medications or treatments, the battles to get your child what they need, and most of all, I think, the future not having relief in site---the knowing that until the day I die, I will be responsible for Janey.

I'd add a few to the article---the tension that the autistic child creates in a household, that leads to everyone being on edge and more prone to fighting, the endless cleaning up of the messes the autistic child makes, the media finding a new way every day to point out how you inadvertently caused your child to be autistic, the few unkind strangers who make going out in public a minefield, the sadness from not ever being able to give your other children enough time, the worry about what is happening to your non-verbal child when you aren't with them...I probably could go on for a good long while.

And so I don't think it's strictly right to call what other parents and I often feel "depression". I call it more...a logical reaction. Tonight it is feeling that way, anyway. Back to trying to be upbeat next time, I promise.

Tired

Lately I've been very, very tired. There could be a lot of reasons---my thyroid medication might need upping, I might be anemic, I might be getting sick---but I think the real reason is I'm constantly on guard. I am always tense to some extent, waiting to see what Janey does next. Things can seem perfectly calm, she can be in the next room singing away to herself and happy as can be, and I can look at her and see she's covered with what she found in her pullup, or tearing all the stuffing out of the couch, or pouring out a bottle of shampoo or lotion, or eating some paper, or taking off all her clothes, or opening the fridge and trying to eat ketchup or mayonaisse or crushed tomatoes or whole garlic cloves, or using my permanent marker to write on things, or sometime, just staring into space. You never know. And I am, if I do say so myself, a very attentive parent. I used to have people comment about the boys that they never got even scraped knees, as I didn't let them loose enough for that to happen. But the most attentive mother on earth cannot keep her eyes every single second on one child. And I am getting worn down by trying. Even when Janey is at school, I am on edge---not that they call me or that I worry she isn't being cared for, as they love her and care for her as well as I do if not better---still, I worry about how she is doing---is she having a tough day? Is she crying? Is she trying to bite people (which she hasn't done in a while, but I worry she will start again) Has she wet herself and is resisting being changed? Is she OKAY?

And all this Janey watching and worrying has to happen along with the rest of my life. I need to be there for two teenage boys---to listen to them, make sure they have clean clothes to wear, make sure they have good food to eat, keep the house in a minimal state of cleanliness, do dishes, pay bills, drive people places, work at my business when I can to get the little extra bit of money we so much need....and I'm tired. I take five medications---my health isn't perfect, but I don't even have time to think about that. What I do, whether I have time for it or not, is fall asleep almost every day during the day. When Janey is at school, whether I have slept well at night or not, I put the phone right next to me and nap. I try not to, as it uses up the little bit of time I have to myself, but I have to. I literally can't resist.

This is a very whiny post. I don't want to sound like a complainer. I am luckier than many parents of autistic children---I have a supportive husband and my other children are old enough to help out. So why am I writing this? I guess because I want to support others with autistic kids---you are not alone. It's very, very, very, very hard. Take care of yourself. Make sure you get the rest, the breaks, the fun that you need. It's very hard to do, but I think we all need to try. This winter has driven me to near a breaking point, and I think my body is telling me that. If you know someone with an autistic child, help them out if you can. Offer to watch their child for an hour or two, if you feel you can. Or if you don't feel you can, which is quite understandable, try to get them out of the house while their significant other or another friend watches the child. Let them vent if they need to, but try to also give them a good time that has nothing to do with parenting or autism. If they can't get away, figure out what they can do for fun that keeps them at home. If they are into Facebook, see if they play some game on there you could play with them. If they watch a TV show, maybe come over and watch it with them, or even watch it at home so you can talk to them about it. Or just call them up and listen, and encourage them to just talk about light fun things too---celebrity gossip, the weather, etc---if they want to. But if they just need to vent about their life, listen and sympathize. Even if you can't do a thing to help, it helps in itself just to say you can see how hard it is. Maybe give them a chance to do something for YOU. One of the things that wears at me is how little I feel I can help others. I can't get out to volunteer, I can't make fancy snacks for Janey to take to school, I can't watch other kids much. So when someone asks for a ride, or asks me to write a letter in support of something, or asks me to help in some way I actually can, it's a boost.

Too long, I'm rambled here. But thanks for reading, if you are. That helps too!

When we really connect

I love it when I feel like Janey and I really connect, really share a moment together. The best time for that is in the car, when I play music. I made up a CD of Christmas songs, even though it's a little early for that, and prepared for her to freak out the first time I played it, as she usually does, but instead she was so happy. None of the songs were totally new to her, which helps. I look at her in the rear view mirror when she is enjoying music and we look right at each other and smile. I feel like it's one of the few times we connect with each other without having to talk. When we got out of the car, she was already singing "Hark the Herald Angels Sing". Of course, tonight she got singing it again and got "stuck" on it, something that hasn't happened much late, when she is singing something and can't stop although she obviously wants to, and she get more and more upset.

The other night, she asked me for a necklace,which surprised me as I didn't think she knew that word. I gave her one and she put it on and said something like "Oooh..." which doesn't sound like much, but she said it in such an engaged tone, exactly like a woman would say that if she put on a dress that looked just right or something. She was so happy in such a "normal" way. She went and looked at herself in the mirror for a long time. That is an area where she is probably more mainstream than me. She loves to check out her clothes, hair, accessories, in the mirror, and turns around to see how it looks from all angles.

She gets very upset every day right when she gets home from school. I remember my mother saying my sister used to do that too, like letting out all the tension of the day. I try to be understanding and have food ready and give her all my attention, but I think she needs to freak out a little anyway. I would not think of school as being tension-filled for her, but I guess it is.