Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

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.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.

Okay, Scientists, You Got Me Again!

Once in a while, I have a sneaking suspicion that autism researchers are messing with me.  I think they get together and say "Okay, let's pull up Suzanne's medical history and that of her family, look at everyplace she has lived and all the circumstances of her pregnancies and childbirths.  We'll pick something new from all of that this month to release as a possible cause of autism.  Wait 'til we see the look on her face!"  Of course, I'm not truly that paranoid or self-centered, but sometimes it's amazing how many potential causes of autism would work for me.

The newest is iron intake.  I have almost always tested as anemic, and that was very much the case during all my pregnancies.  With Janey, it was exasperated by the fact that the iron I was taking seemed to interfere with my thyroid medication.  Because having a thyroid basically not working was considered much more dangerous than having a low iron count, for the last half of the pregnancy, I didn't take iron.  I tried hard to eat a lot of red meat (despite popular belief, I was told it's a far better source of iron than green vegetables), but still, my iron remained low.  So there's another reason for Janey's autism!  It joins a nice long list, including the low thyroid itself, a family history of autoimmune disorders, my allergic reaction to Aldomet at 12 weeks pregnancy, the fact I live near a major street, several possibly on the spectrum people in Tony's family and mine, Tony being an older father, my living my first 6 years near Lake Eire at its most polluted with PCBs, preeclampsia during my pregnancy, birth trauma (Janey's umbilical cord was around her neck twice)....that's just the ones I can think of easily off the top of my head.

Those scientists missed the boat with ONE potential cause I saw the news today---having children very close together.  However, I'm not out of the woods with that one, because if you wait TOO long to have a child, over 5 years (there is 7 years between Janey and Freddy, exactly), the risk of autism again rises by 30%.

What do I do with all this?  Not much.  There isn't anything I can change from the past, and I'm certainly not planning on having any more children---I'm 48.  I am glad research is being done, but all joking aside, the fact that so many of the factor apply to me is probably the case with many parents of autistic kids.  There are so many potential reasons thrown out there that I couldn't imagine being a pregnant woman trying to avoid all of them.  There's just too many.  I think about this in terms of my sons someday.  If they become fathers, there were certainly right off the bat be an increased risk of them having a child with autism, and I feel for their future wives thinking about them trying to avoid any further risk.

Do I sometimes feel guilty about all the risk factors that might have affected Janey?  Of course I do.  I know I shouldn't, but guilt isn't a logical emotion.  I don't obsess over it, but I think about it.  I get angry about a few of them, especially the Aldomet reaction.  I wonder if I should have had a C-section---if a good ultrasound could have seen the cord around Janey's neck.  I worry I didn't do enough to keep my iron up.  I have other worries, the kind that suddenly hit you in the middle of the night and aren't logical, but the middle of the night brain isn't good at logic.

I hope some day, all the possible causes of autism are narrowed down, or at least better defined, so that knowledge of them can be incorporated into prenatal care and PREprenatal planning.  I suspect, though, that no matter what, we'll never totally have answers about autism's cause.  I hope society will do its very best to support the children that, despite all the research, still develop autism.

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.

Mythologizing Recovery

I've been continuing to read "Far From The Tree".  It's a very long book!  I've finished the chapter on autism, and I'm going to write more about it when I finish the whole book, but in that chapter, there was a quote that struck me very hard.  It was written by Cammie McGovern, the mother of an autistic child, in a New York Times op-ed piece (you can read the whole piece here) and it said "In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."  That says a mouthful.  She says in the piece something I've thought---that you don't really meet these recovered kids outside of the books.  I am sure they exist, in a way.  In fact, I have one in my own family, in my son, in a way.  But I don't think he was ever autistic to start with, and if he was, I didn't "recover" him.  He recovered himself, or his brain recovered itself.

Do I feel like a failure because it doesn't appear Janey is going to "recover"?  Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that.  It is not my goal to have Janey recover, because I don't think it's possible.  And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.

I was thinking of an analogy.  Say you had a kid, a "typical" kid.  A great kid, but with a huge amount of trouble with math.  This kid just doesn't get math.  He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid.  But he is no good at all at math.  And that just is not okay, with his family or school.  They decide to "recover" him, to fix his math problem.  And because anything worth doing is worth doing all out, they go all out.  They start a 40 hour a week math tutoring program, for starts.  They have him get rewards for doing math.  Before he can play chess or write his poetry or run, he has to do a math problem.  They work math into every part of life.  Now, this kid is never going to be a math whiz.  Not even the most optimistic people think that.  But the goal is that he be indistinguishable from any other kid with his math abilities.

One of two things can happen.  He can recover to the point that he functions as well as anyone at math.  It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it.  Meanwhile, he's lost out on time he could have spent doing things he's really good at.  He's been hugely frustrated over and over.  He basically didn't have a childhood for years, recovering that math.  The other result---it doesn't work at all.  He doesn't learn math.  Maybe he can do a few math facts here and there, unpredictably.  But he will never, ever be in a regular math class.  The time teaching him basically has been wasted.

Now let's look at another way to handle his math problem.  We could say "well, math is not his thing.  It's quite helpful in life to know a little math, so we will work with him on that.  He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood.  We are going to emphasize what he's good at.  We will help him with math, but we realize that he won't be going to MIT.  He won't be taking calculus.  He might spend his whole life with a little trouble counting change"

Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same.  I accept that Janey is autistic.  There are things she'll most likely never be good at.  But there are things she's very good at, and besides that all, she's a kid.  I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely.  But she'd lose out on a lot.  Or it might not work at all, and I would feel like a failure.  Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school.  I say no.  I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing.  I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.

Okay, another check on the checklist

The latest news from the world of autism? Fever during pregnancy can double the risk of autism. Here's an article. Lovely. Another way I caused Janey's autism. It's like I went into the future, found a list of all the ways they were going to decide autism could be caused, made up a checklist and tried to hit them all. If there was something called double autism, she'd probably have that, I hit so many of those checkmarks.

The fever I had, at 12 weeks, was pretty severe. It was caused by my reaction to Aldomet, which I was put on due to getting preeclampsia (high blood pressure and other problems) early in my pregnancy. Of course, preeclampsia is another risk factor recently discovered for autism. Of course.

I can't wish they wouldn't discover all this stuff. I want to help other mothers-to-be. And I know that I certainly didn't MEAN to put Janey at risk for autism. I would have done ANYTHING during my pregnancy to avoid it, if I had known. But I didn't. Nor did Tony, who was an older father, one of the rare instances where fathers can join in the guilt parade. I didn't know another medication I was taking, which I repeatedly asked my OB if I should stop taking, would later to said to be another possible cause.

I know it doesn't do a bit of good for me, or for Janey, to get upset over all this. I don't have a time machine. I can't change anything. And I should feel happy for others, who might not have a child with autism due to all the recent discoveries. But of course, I feel guilty. That's what mothers do.

What I've let go

This month has made me reflect on what I've let go in my life. My grandmother died a few weeks ago, at the age of 99. As is often the case when you lose someone, I am feeling guilty. I know I didn't call her or write her or send her presents or visit her as much as I should have during her last years. I keep asking myself how hard it would have been to be a better granddaughter. I know I'm doing the same with some other people that are dear to me---a wonderful friend I met on ebay, my ex-boyfriend's mother who is much like a mother to me, in fact, many friends who I don't do as much for as I should. My friends and family have always been very important to me. I used to be the type who sent out all kinds of Christmas presents, called people on their birthdays, picked up the phone a lot just to check in. And now I'm not. I'm pretty self-centered. If something doesn't work for me, I let it go.

And I tell myself---I've had to do that. Janey takes every ounce of my patience, my creativity, my capacity to be caring. Not every day, but often. Once she is at school, or out with Tony, I collapse. I do nothing, much of the time. Once I get a little energy, there's a huge list of essentials waiting for me---laundry, dishes, bills. And then I need to work, to make the little bit of money that makes the difference between total bare bones and getting take-out once a week. And of course, and they should have come first, I need to give my attention to William and Freddy, and to Tony. There just isn't much left. Any single phone call or present or card might not seem like much, but I've come to feel too often that it's too much. I have retreated into myself.

I'm very lucky I have friends who have stood by me for this. I need them, so much. Other friends haven't really understood, and I feel awful about that. I'm thankful for Facebook, which is not a substitute for real human contact, but which does allow me to get a quick update on how a lot of people are doing, and perhaps just even "like" something they have said. If anyone is reading this and would like to be my friend on Facebook, go ahead and send a friend request (Suzanne Billheimer Amara), because that is the best way to keep up with me, out of necessity.

I hope someday I'll come out of this fog a little. I want to be the friend I once was able to be. I can make excuses, but for some things, there aren't any excuses. My grandmother is gone. She's not coming back. Maybe some people are stronger with this---they have energy left over in spades to keep being the person they were before autism snuck into their life. I don't. And I wish I did.

Making tough decisions

Lately I've been realizing there is just so much I can do in life, and sometimes I have to just preserve my sanity by not doing things I just feel like I can't do. I won't get into all the details, but I had made plans to do something for a friend, and just felt like I'd hit a wall and couldn't take doing it---it would have involved a long car trip and a weekend away and I knew it would be hell on wheels with Janey upset the whole weekend and me exhausted (I was sick on and off for a month) and I just drew the line. I am not sure if it was the right thing to do, as I know I hurt the friend very much, but I am not going to be a good mother to Janey if I am not able to function. It is hard as I know that no-one without a child like Janey really, REALLY gets it! (Thanks for being out there, Michelle!) Even days she seems happy and cheery and sweet, it can all turn in a second. The picture here is from today---we went into the city to a free concert by There Might Be Giants. Janey enjoyed the concert overall---she jumped up and down non-stop and didn't cry, but I had to hold her hand EVERY second as if we let go even for a second, she bolted into the huge crowd and someone had to run as fast as possible to grab her. She's a fast runner. And I was on edge every second, hoping she would stay in a good mood, not freak out, not get lost, not ruin everyone's day. I can't say it was enjoyable for me. But probably no-one there would have guessed that---I am not going to be grouchy at all times and not smile and remind everyone how hard my life is, and they can't read my mind, so I think sometimes since I am the one responsible for her and no-one else ultimately (when Tony isn't there), it is just impossible for them to really, really understand. Actually, Janey has been great lately a lot of the time. She actually sat through TWO meals out and allowed us to enjoy our meals. But when I say she's been great lately, I edit out the at least hour or two each day probably she spends crying, either off and on or non-stop. And I edit out all the things we don't do or have to do to keep her happy---all the times the boys don't get attention, or we don't go someplace we'd like to, or I am just vigilent making sure she isn't running away or eating things that aren't food or exploring the contents of her diaper or taking off her shoes and socks outside or taking toys from other kids or so on and so on and so on. I sound like one big run-on complaint here, but I decided when I started this blog that here was my place to vent, because so much of the time I am concealing how I'm really feeling.

Anyway, after all that rambling, I worry I've really lost a close friend by drawing the line about what I felt I could do. I don't want to lose friends, but I guess my family has to come first, and because Janey is the one in the family that has the most needs and needs me most, I can say Janey has to come first. And to be able to be there for Janey, sometimes I have to put my own needs first. And that's the hardest part.