The Family Motto

When the boys were young, before Janey was born, I read a parenting book that talked about the importance of having a family motto, a family mission statement.  I wasn't really sold, especially because most of the examples given in the book were of families developing a motto that spoke to how important high academic achievement, or charitable giving, or constantly striving for excellence were, and unless most kids the ages of mine were far more forward looking than my boys, I didn't buy it.  But out of curiosity, I asked Tony what he would pick for a family motto, and he said "Enjoy Life!"

I've thought often that really is pretty much our family motto.  Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for.  And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves.  But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.

What's making me think of this motto lately is a few essays or posts I read by autism parents lately.  (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page).  One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical.  The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.

I won't put down the mothers involved, or judge them.  It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point. 

However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.

I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical.  Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy.  The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness.  More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all.  And that ties back to the family motto.  You can certainly enjoy life without college, or a job, or your own home.  Sometimes those very things bring a lot of UNhappiness.

There isn't any one right way to be happy.  The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there?  There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary?  There's a lot she enjoys hugely that she can do right now.  Happiness doesn't need to be mainstream.  Janey loves to ride aimlessly in the car listening to music.  She loves to watch certain episodes of TV shows time and again.  She loves to have her father cook for her.  She loves to "steal" our coffee on weekends.  She loves to take showers.  She loves to eat chips in the driveway while the stray cats try to get some.  She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example.  But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy.  Is it worth it?

Of course, there is more to life than enjoyment.  But as a goal, as a motto, I think it works well, perhaps especially for Janey.  There is so much of life that is hard for her, just by being someone living a bit less typical a life than most.  So why not aim for as much of her life to be happy as we can?  Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?

The last day of summer

School starts tomorrow, and I must say it's not a moment too soon.  I don't like summer.  I never have, and I don't think I ever will.  These last few weeks of summer with Janey have felt brutal.

I of course feel right away I must modify that.  There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry.  But in terms of sheer endlessness, these few weeks have few equals.

I have been taking the advice of a lot of my friends I've met here, and I thank them for it.  I've been trying to be easier on myself in terms of what gets us through the day.  TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that.  TV equals bad parenting, in my mind.  But in some ways, that is a selfish view, because for Janey, TV equals happiness, often.  She adores her shows.  Her default position in the house is in front of the TV, standing up and dancing and jumping.  She has strong opinions about shows, and even episodes of shows.  It's not random watching.  She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming.  I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart.  She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets).  She interacts with the shows, more than with people.  So---I am trying to relax and accept that.  But I'll admit it.  I feel like a bad mother when the day is mostly TV, often.

I think what most frustrates me is how hard it is to go anyplace outside the house with Janey.  It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits.  I want to get out of the house, but with Janey, it's so hard.  It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own.  It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene.  Taking Janey places is a two or more person job.  If there is backup, it can be great.  I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen.  If there's two people around or more, we've had some very successful outings.  But these weeks, it's been just me, and that's tough.  Again, I'll admit that makes me feel guilty.  I have an overactive inner voice, one that says "You are just lazy.  You aren't trying hard enough.  You just want to stay home and sit around"  I think it's time I told that inner voice to shut up and look at the facts.

We do one trip every day---the short walk to the "ice cream store", the convenience store near us.  I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me.  She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.

So, when I think about it, these weeks have probably been harder on me than Janey.  I think Janey is okay.  It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over.  That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege.  I talked to Janey's teacher for the year yesterday.  It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher.  I am looking forward to Janey's 6th grade.  I think she is too, as much as she looks forward to things.  So I say goodbye to the summer of '16.  I won't say good riddance, but I will say I'm ready for that goodbye.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

When is autism going to make me tough?

I would like to get tough.  By tough, I don't mean mean, or angry, or physically strong.  I mean tough mentally, in that what people say to me won't bother me, in that I can not be moved to tears myself by Janey's crying, in that I can stand up for Janey always, to anyone.  If it's true what the cliche says, and that you are given "special" kids because you are especially strong, well, as I've said before, a mistake was made.  I am not strong.

What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store?  What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead?  What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something?  That tough mother would have confronted that woman and educated her on autism and politeness.  She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved.  She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.

I'm not doing opposite talk her---trying to say that being tough isn't really the right approach.  In those cases above, it is.  Being tough is what I should be.  But I can't.  I'm no good at it.  I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life.  I am not confrontational.  I am no good at being strong-willed.  I want to keep everyone happy.

Autism parenting is supposed to change that.  I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it.  And they are making firm decisions about raising their child---no more videos!  no more middle of the demands!  no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.

What do I do?  I accept the half day placement.  I walk away from the nasty woman and go to the car and cry.  I don't make any demands.  I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in.  I don't want her to be sad.  I don't want to confront people.  I don't want to demand things.

Somewhere along the line, a cosmic mistake has been made.  I'm not the tough mother I should be.  Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow.  I don't think I'm going to get tough at this point.  I mean, if Janey was being attacked by a lion, I'd jump in.  I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged.  But it takes a lion attack style happening to bring that out.  I'm not a warrior mother.  I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.

How autism has made me a worse mother

Somewhere in Internet Land, I read recently a post that talked about how having a child with autism had turned someone into a Supermother.  That set me off on a big thinking marathon.  My first reaction was born of growing up in a time and place where you just didn't say things like that.  Even if you had a thought somewhere in the back of your mind that you might be somehow slightly super, you pushed that away---that kind of self-promotion was just plain wrong!  Then I thought about myself, and thought even if I didn't have that aversion to self-promotion, I would in no way say that autism has made me a super-mother.  I took it a little further, and realized that autism has made me a worse mother than I otherwise would be.  I'm not saying that looking for backwards praise in any way.  I know some people might think just by getting through the days with a low functioning child with autism makes you a better parent.  But I would disagree, and here's some reasons why...

First of all, I'm tired all the time.  Being tired, without any other factors, makes me less effective as a parent, both to Janey and to my boys.  I don't think anyone operates better when they are tired.  I am too tired often to do the kind of things I want to do with my kids---to be creative in helping Janey learn, to work with the boys on projects or homework, to take them interesting places, to volunteer at their schools or to fix them wonderful lunches, or, on the worst days, even to just sit and listen to them.  When I have a moment, I want to sleep, or to do something mindless to relax.  

Then there is the time factor.  So much of the time I have is taken up with the types of parenting tasks that are necessary, but not fun or nurturing---changing pull-ups, cleaning up spills, washing wet clothes, just plain watching Janey to make sure she doesn't run off or put something she shouldn't in her mouth or otherwise hurt herself or others.  Every minute I spend doing that kind of thing takes away a minute I could be reading to her, or discussing ideas with the boys, or watching a movie with them, or just doing the kind of family activities we never do any more.

I'm also not a great mother in terms of even those menial tasks.  I'm not a good housekeeper, because when I have time to be, I'm exhausted, or I choose to steal those moments for something else.  I don't have the mental energy to think up great meals.  I don't always keep up with the laundry like I should.  More times than I would ever want, the boys are left rummaging in the dryer for socks or uniform shirts.  I am in no way a model housewife.

The big issue, though, is that I don't think autism plays to my strengths.  I always think of that inspirational fable about God handing out special needs kids, and picking a very special family to give kids with disabilities to.  If that story was true, I would think there was a mistake made.  I know I have a lot of parenting strengths.  When the boys were little, I don't think there were many kids that were read to more, or talked to more.  I have a huge store of patience for questions and long discussions.  If they ever wanted to talk to me about something that was bothering them, or excited them, I was there for that.  I delighted in their personalities.  I loved watching them grow up, and I still do.  But I wasn't a baby person.  Those early years were tough for me.  I was in a hurry for them to grow bigger, to engage with me mentally.  With Janey, the early years are hugely extended.  I am in some ways still raising a toddler.  I'm stuck being the mother of a child in an early stage.  I love Janey more than life itself.  I have accepted who she is, and I will be the best mother I can to her always.  But I can't lie to myself.  I wish, I wish so very much, we were reading through the Little House books together, or talking for hours about dolls she might want or the social interactions of second grade or even that we were fighting about what clothes she could wear.  I am good at those things.  I love those things.  

And so, autism has not made me a Supermother.  Autism isn't magical.  Life isn't like a kids' book, where if something tough happens, there is always a silver lining.  You don't get automatic compensatory powers in life.  Autism is just autism.  I will always do the best I can, but I won't pretend that it's easy, or that I'm better for it.

My autism resolutions for 2013

I am not big on making New Years resolutions.  I don't ever like to delude myself, so I don't like to make ones I know I won't keep.  That's just a setup for feeling awful about yourself, I think.  But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general.  Four ideas, to be exact....

1.  Delight in Janey whenever possible.  There is so much hard about raising Janey, so much that is tiring and overwhelming.  But there is also a lot that is wonderful.  I am lucky that way.  I am going to try very hard to delight in her, when the opportunity presents itself.  I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across.  I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off.  I'm going to sit more with her watching her favorite shows and laughing along with her to them.  I'm going to find more music she likes and listen to it with her.  I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books.  I'm going to let myself just plain have fun with her.

2.  Be easier on myself when the autism parenting gets tough.  Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed.  I don't think that's serving me any more.  If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done.  I'm going to admit to myself that Janey is one tough kid.  She's a kid that overwhelms people like her doctor in just a 10 minute visit.  She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help.  She's a delight often, yes, but she's very, very autistic.  She's a toddler in a 8 year old body.  She require constant supervision.  If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.

3  Speak up about autism issues more.  I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs.  I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures".  Often, I just smile or say thank you.  I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that.  I keep the peace.  I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up.  If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.

4.  Treasure my fellow autism parent friends.  I thought a lot about the past year last night.  I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult.  How it's extremely isolating being her mother.  And then I thought about the people I know get it.  I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day.  I hope to become real friends with anyone out there who reads this and can relate to it.  We have to be there for each other.  I realize more every day how important that is.

With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.

Why is the crying so hard?

Janey had a very long happy period, but the last few weeks, the crying is back. It's not all day every day, but it's part of most days. And it's making me reflect---why is it so very, very hard to take? Why does one day filled with crying practically wipe out my memory and happiness of weeks of good days? My friend Michelle said something similar to this today, and I agree 100%, but I'm still not sure why it's the case.

I have some guesses. With most kids, when they have a bad day, you know the reason. And you know it will get better. With Janey, I don't know the reason, and I don't know if it will get better. There was The Bad Time, or several of them, when it really didn't. Of course, her big regression, and also that awful crying time several years back. They either never got better or didn't get better for a long, long time. And that scars you. It's probably some kind of post-traumatic stress type feeling. Everything flashes back, and I feel helpless and hopeless.

It's also I think hard-wired into mothers to be upset by their children crying. If we weren't, babies wouldn't last long. When a baby cries, we can't ignore it, or at least it's nearly impossible to do so. One of the first things you learn as a mother is how to understand the cries, how to try to stop them, to make the baby happy. And Janey is still my baby, in so many ways. When she cries, I feel I have to figure out why, and to stop her, to make her happy. And I can't. She's crying right now (Tony is with her), and it's all I can do to not get up, to ask her the question that almost never, ever gets answered "What's wrong, sweetie? How can I make you feel better?" It's usually useless. She doesn't know what's wrong, or she doesn't know how to explain it. She might have pain, or she might have heard a scary noise, or she might be tired or hungry or overwhelmed or bored or angry or frustrated or who knows what. I feel useless as a mother when she cries. I know that's not true, not logical, but a mother's inner instincts aren't always logical.

I tell myself during the good days to treasure them, to remember how it is when she is happy. I try to convince myself that someday she won't cry any more, that if we all keep working and trying, she will learn to communicate enough to not cry. I tell myself in the meantime I can't let the crying turn me inside out so much. But truthfully, none of that works. I don't know if it ever will.

Happy Mother's Day

I want to send out Mother's Day wishes to anyone reading this, whether you are a mother of your own children or not. If you care about children, you deserve a day.

It's been a very nice Mother's Day. Tony and I often joke about how bad some of my past MDs have been! It seems like everything always went wrong, or everyone was in an extra bad mood, or someone was sick. Today, everyone was happy and healthy. William surprised the heck out of me with special cupcakes he bought on his own from Rosie's Bakery, with the most delicious frosting I have ever tasted. Freddy made me a card with an assortment of photos and sweet words. Janey was cheery and said "Happy Mother's Day!" with a little prompting. Tony made me some French Onion Soup and gave me a big break. I spent most of the day reading sci-fi short stories.

I've been feeling a little more positive about mothering and autism lately, which you probably can guess is directly related to Janey's extended good mood. Yesterday, we went to some lawn sales with her, and had a sit-down lunch at Burger King--as fancy as we usually try with her. Just Tony, Janey and me, and it felt nice. We enjoyed seeing her enjoy the food, we put the little crown on her, we all ate well and laughed and enjoyed ourselves. In the middle of the meal, I was struck by something---that this was a preview of the rest of our life. The boys will move on and out, and although they will always hopefully be a huge part of my life, they will have their own life. And the unit left will be the three of us. On most days, that scares me, but yesterday, for a moment, it felt good to think about. I could see it working.

I will be a mother forever, like every mother, but unlike most mothers, I will probably be a hands-on, child at home mother forever. It's overwhelming, but for today, for a present to myself, I am going to think of the bright side of it. I always wanted to be a mother, and I always will be one.

Re-entry

Tony and I got away overnight for our anniversary, thanks to my parents, which was wonderful, wonderful, wonderful. It seemed like much longer than a day and night. The hard part, though, is coming home. It's getting harder each time I am away for a day, which isn't too often, but does happen occasionally (thanks, Julie!) I guess coming back gives me a perspective on Janey, and sometimes that is hard. She has been in a great mood this week, and was very good for my parents, so it wasn't a behavior issue. It was more my own issue. I think I have a dream of her being very excited to see me after the day away, or at least seeming to notice I'm gone or ask for me. I know that she does notice, I know she's happy to have me back, but sometimes, I dream of that big hug, or at least her asking where I am, which isn't something she would really know how to ask. When I saw her first yesterday, she barely looked at me. And as I said, it's my issue, not hers. It's what I wanted, not what she needed to do.

It made me think about more aspects of her autism and delays that are hard for me, and not perhaps for her. As we waited for the lunch place yesterday to open, I couldn't resist stopping into the American Girl Doll store. There's a real fantasy---even if Janey had the slightest desire for such a doll, I couldn't afford to get into that world. But it's one of those mother things. I would love her to WANT one. And it makes me wonder if in some ways I am like those mothers I like to laugh at and be disgusted by when I can't help myself and watch my guilty pleasure show, "Toddlers and Tiaras" There are parts of being a mother that are just for the mother, not the kids. Janey doesn't know that American Girl Dolls exist. She doesn't know that I would like her to be excited to see me. She doesn't know I had dreams of introducing my little girl to books I loved and reading along through the series of Little House or Narnia or Oz books with her. She doesn't know how I thought about going into toy stores with her and discussing which new Calico Critter we would be able to get, or even how I daydreamed about arguments we would have over clothes. Those are my regrets, not hers.

And of course I know---even if Janey were not autistic, she'd be her own person and might have absolutely no interest in any of those things. I don't need to be reminded of that, even though it's only myself reminding me. Or maybe I do. I need to be reminded that when Janey is happy, I need to be happy along with her, even if what makes her happy is not my dreams for her. She is happy asking for oatmeal, watching the Care Bears, listening to "Keep on the Sunny Side" for the four-hundredth time. I'm glad she has her own things that make her happy. We all need to have those, and I need to remember that.

Tired, just...tired.

Lately I've been very, very tired. It could be a health issue, but I don't think so. I think it's more likely mental exhaustion, maybe masked depression. I know there's nothing more fun that reading about someone else's depression---big sarcasm alert there, of course. I try very hard to stay positive, and on the outside, and even to myself, I can feel that way a good deal of the time. But then there's the tiredness. It's the kind of tiredness where I can sleep what I think is a good eight hours, but then during the next day, I can't think of much else but napping. I can't get work done, or concentrate on much. It's a little much.

This article talks about stress and fatigue in mothers of autistic kids. It's very true. I can't say it's like being a combat soldier---that's probably going a little far. I don't worry about being shot at all the time. But it's a 24 hour a day job. The two extra hours of caregiving a day seems a little low to me. Every single hour except when Janey is at school is an hour of caregiving, and the intense kind. If Janey is out of my sight for more than half a minute, I am alert and going off to find her. It's literally never-ending. At any point, she might decide to cry for hours, and that is a lot like when a baby has colic, I realized the other day. I had two babies with colic, and I found a book about it in which a Vietnam vet said it was worse than anything he's experienced in Vietnam. Again, I don't think it was that bad, but it was pretty hard. It's a child you love so much crying, and you don't know why. When it's colic, it's for couple months. When it's autism, it's forever. When Janey tantrums and cries, I almost always don't know why. And you can't do what they always say to do if you are overwhelmed by a colicky baby. You can't put her in a crib and walk into the next room for a few minutes (not that I ever much was able to do that with babies, either). You have to make sure she doesn't hurt herself, or wreck the house, or try to go out the door. Even when she's happy, the alert doesn't go down. She tries to eat anything. She gets notions to throw things. She gets so happy she gets crazy-happy and can fling things around in excitement.

Writing this, I can understand my own tiredness. But understanding it and letting myself give in to it and rest are two different things. Something in me tells me I have to be productive, that just resting is not an acceptable way to spend time. The opposite impulse, to get the rest I need, overwhelms me often, and that creates guilt. I rest, but I don't relax, as I feel guilty all day I'm not getting more done.

I don't have a solution here. It feels good to write about it, to work it out in my mind a little, but I know it's not going to change any time soon. Maybe that's all I can do---keep writing and reflecting, and possibly someone out there in the similar situation will know they are not alone.