Daddy's thank you to Janey during trying times

Janey, I want to thank you for being such a very good girl during this Corona Virus time! I also want to thank you for making me so happy after you got better from being very sick from your appendix that burst about five years ago.

Too many times daddy feels angry or sad about things. But you help me forget my angry and sad feelings. You are always jumping up and down, smiling, laughing, singing and playing YouTube kids on your iPad. You helped me learn some of your favorite nursery rhyme songs because I watch a lot of CocoMelon, Chu Chu TV, Mother Goose Club, and Dave and Eva with you on the Internet. I even learned to play the harmonica for some of your favorite nursery rhyme songs! Your whole face smiles when you hear me play songs like Ten in the Bed, Looby Loo, Skip to My Lou, Five Green and Speckled Frogs, and a few more songs.

Thank you Janey for asking me everyday to give you car rides with music because you still want me to play British Invasion 1960s music on YouTube. You helped me find some super amazing songs and videos like "See See Rider" by the Animals, "Tobacco Road" by the Nashville Teens, "I Feel Free" by Cream, "Baby Please Don't Go" by Them, "Someday We're Gonna Love Again" by the Searchers, Fleetwood Mac's "Oh Well," "Have I the Right" by the HoneyCombs, "I Can See for Miles" by the Who, "Shapes of Things" by the Yardbirds, "Sunny Afternoon" by the Kinks and "Long Tall Woman in a Black Dress" by the Hollies!

And Janey, you have me watch a lot of your favorite movies on Disney +! I have a lot of fun watching these movies as you ask me to play "Miguel the Guitar Boy," which is really called Coco, "Bad Llama," which is The Emperor's New Groove, and all your "Buzz Lightyear" movies, which you sometimes call by their real names, like Toy Story 3.

Janey, you make mamma and me laugh so loud when you sing to yourself or repeat some lines from your favorites movies. I often hear you sing "a cold cup of coffee and a piece of cake" which comes from a song named "Matthew and Son." Sometimes you say "put me down you idiot," and I laugh because that was when Big Baby from Toy Story 3 picked up evil Lotso and threw him into the trash!

Oh Janey, please never stop being yourself as you are just too funny! You smile and laugh for your brothers William and Freddy when they play with you! Mamma and daddy love it when you smile so much for your teacher when she uses her computer with Zoom to see you! We love it when you hug us over and over because you're so happy and enjoying life!

Thank you Janey for making me a better daddy and a happier person!

You are the best Janey!

Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!

Silver Anniversary

Yesterday was our silver anniversary, marking 25 years of marriage.  And I was thinking all day that if I'd somehow been able to see the future, and needed to pick out a husband specifically to be my partner in parenting Janey, I couldn't have picked a better man than Tony.

You don't hear nearly as much about autism fathers as autism mothers.  But I'm pretty sure Tony's not the only fantastic autism father out there (in fact, I know for a fact he isn't---here's a shout-out to you, Dan!)  Tony is Janey's rock star.  I'm okay in her eyes, but Tony is her hero.  When he gets home from work, I see a smile that I just don't see any other time.  Daddy takes her for car rides, dances with her, cooks her favorite foods, makes silly voices for her, delights in funny things she says---Daddy is the sunshine of her life.

Almost every afternoon when Tony walks through the door, I say "Thank you for coming home".  He often jokingly replies "As if I have a choice!"  But he does have a choice.  I know that some fathers, faced with the challenges Janey brings (or the more typical challenges that William and Freddy brought) would not come home---would decide that it was all a little more than he bargained for.  And I won't say what I hate to hear---that I don't know how single mothers do it.  I know how they do it.  I know you do what you have to do.  But I will say I can imagine how incredibly tougher my life would be doing this on my own.

I've read that the toughest years on a marriage when parenting a child like Janey are the early years, but I don't think that's necessarily true.  Most people understand that parenting children in the early years is a very intense thing.  But most people also know that it gets easier, that eventually there will come a day when the children don't need to be cared for 24/7, when the children have lives of their own.  That day will not come for Tony and me, or for so many families like ours.  We will take care of Janey for the rest of our lives.  I am not saying this to try to say what a burden it is, how unfair it is, any of that. It is just how it is.  But I don't think many people would argue when I say that does put a strain on a marriage.

However, I think in many ways Janey has given us a stronger marriage.  We need each other.  We need each other desperately.  When Tony gets home, I am thrilled---each and every day.  I am thrilled not always for the reasons you might think of when reading romance novels---I am thrilled because I know I will get a little break, that I can sit and read for a bit.  When we do get a little bit of time alone together, we treasure it.  Yesterday, we had a wonderful day while Janey was at school.  We watched some TV, we went out to lunch, we talked and laughed and reflected on the past 25 years.  I am sure many people do more exotic things for their silver anniversary.  They might take a cruise, or have a huge party, or buy each other big gifts.  But I think we had just as much fun.

I'm not going to say it's all been sunshine and roses.  There have been times when the stresses of our lives certainly brought out the worst in both of us.  There have been bickering middle of the night fights over who slept less, there have been times that we lashed out at each other because we had run out of patience a few toileting disasters ago, there have been arguments over nit-picky things we felt the other wasn't handling correctly.  But in looking back, those moments fade behind the good moments, the moments we together watched Janey do something that amazed us, the times we quoted Janey's latest video obsession and both of us got the reference and we laughed until we cried, the amazing moments when all three kids were together and happy and we couldn't believe we've created the family we have.

To all the fathers out there, indeed, to all the married couples out there living this uniquely challenging life----we raise a cup of coffee in a virtual toast to you.  And to Tony, Happy Anniversary.  I love you.

Thank you, Janey, for being such a cool kid

Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening.  You were up for it, because you are always up for a ride in the car.  You were excited just to be going someplace with your parents.  That's not something every twelve year old girl would be, my sweetie.

I did your hair while Daddy ordered.  I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side.  Then I clipped them together on top.  It looked very elegant on you, Janey, but then again, you always look beautiful.  I told you how lovely you looked, and you admired yourself in the mirror.  You aren't going through that stage a lot of girls do, where you put yourself down.  You know you are beautiful.  I love that about you.

In the car, we got caught in traffic.  But you didn't care, because we were listening to music.  I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed.  You don't love it for that.  You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them.  When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M.  You know what you like, and you have great taste.  You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.

On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof.  There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through.  It's something I would have never listened to, but you loved it and asked for it over and over.  By the third time, I liked it pretty well too, and so did Daddy.  You aren't influenced by anyone else.  You like what you like, and that is great.  We all moved to the beat in the car, driving in the dark and rain, our own little world.

At home, you tried all the Thai food, because you always try everything.  You are an adventurous eater, far more than I am.  We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows.  I think you're even getting to like Richard Dawson.  Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more.  You are growing up.

When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night.  Mama's bed is actually your bed, but we know what you mean.  I lay down with you as you played a little iPad and then fell asleep.  It was your usual bedtime, around seven.  You sleep when you are tired, and you are usually a good sleeper.  Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.

Janey, I know it's very unlikely you'll read this.  You can't read, and if I read it to you, I don't know if you'd understand most of it or not.  And that doesn't matter.  That doesn't make you less interesting, or beautiful, or opinionated, or cool.  I won't pretend it is always easy helping you live the best life you can.  It is hard, a lot of times.  I won't lie and say I don't wish sometimes life would be easier for you, or for us.  But you are one incredible kid.  I love you, Janey.

On loving the real Janey, not the potential or perfect Janey

For a week or so now, I've been feeling frustrated and upset by a lot of what I see out there in the world of the internet about autism.  I haven't been able to quite put my finger on what has been bothering me until now.

This article somehow cleared my mental clutter a bit and allowed me to put voice (internally and hopefully now to you!) to what I've been troubled by.  It's been a combination of themes that have upset me.  These themes, on their own, are well-meant and progressive, but they combined to send a message about severe autism, low-functioning autism, non-or-low verbal autism, whatever you want to call it (and having to be careful what you call it is another issue).  The message they send is "People with severe autism are not valuable or worth helping just the way they are"

One thing that is said a lot about Janey's type of autism is "Assume competence".  There's a lot I like about that idea, but I realize now there's also a lot about it that can lead to the message above being sent.  Janey isn't a valuable person because of something we have to assume, something that might or might not exist in her.  She's not valuable because she might understand more than she lets on, she might be reading without me knowing it, she might be a musical genius in disguise, she might have a higher IQ than she can show by testing.  She's valuable EXACTLY HOW SHE IS AND APPEARS.  She is valuable even if she never, ever progresses beyond where she is right now.  She's valuable without having to assume anything.

Another trend I see here and there lately is that of never saying anything that isn't positive about parenting autistic kids.  There's sometimes an implication included that if you don't speak only of the wonder and joy of raising your child with autism, you are lacking as a parent, you don't love them, or, at the very least, you are leaving a trail that they might someday read and feel upset about.  Well, I'm here to say that anyone who never has found anything negative about parenting ANY child is at the very least kind of clueless, and at the very most kind of, well, lying.  I love all three of my kids with an intensity that almost scares me.  But there were moments in parenting all three of them that were horrible.  There were scary moments, frustrating moments, moments I felt angry, moments I felt in despair.  In setting aside kids with autism as somehow being different than that, somehow being incapable of provoking any feelings but pride and wonder and joy---that seems to me to be again saying they are only valuable as some kind of fairy tale innocent, some kind of otherworldly being.  Janey is valuable for who she is, exactly how she really is.  I don't have to be careful with every word not to break a bubble of illusion around her, because I love the real Janey.

In so many areas, the thoughts and beliefs of a culture change like a slow-swinging pendulum.  In the past, a child like Janey would be seen as a tragedy, someone to "put away" as to not ruin the lives of the parents and siblings.  I am so thankful that is not the thinking now.  But we have swung to the other end of the line, where Janey and children like her are full of amazing potential and a glowing beacon of perfection in a fallen world.  That leaves parents like us, parents terrified about the future, living a life that is hugely full of stress, getting by from day to day, left feeling like we are somehow at fault, somehow seen as not accepting or loving our children enough.  In my eyes, being honest about children like Janey, the good, the bad, the wonderful, the terrifyingly tough---to me anyway, that is love.  That is love of a real child, not a symbol or a potential or a myth.  I love Janey.  I love my low-functioning, severely autistic child.  I love her, the actual her, the truth of her.  And I know there are many, many other parents like me, and many, many other children like Janey.  I am going to try to keep being brave enough and honest enough to honor Janey by telling the story she can't---the story of a little girl, who, like every child in the world, deserves love exactly how she is.

Why I Do This

Recently, my son Freddy read one of my blog posts and didn't like it.  He felt one line in particular wasn't good, when I spoke of how Janey is one in a thousand in terms of her level of needs and disability.  I based that number on statistics I've read of kids at her IQ level and functioning level.  However, Freddy said I was trying to make people feel sorry for me.  That isn't what I was consciously aiming for, and I hope that isn't how it came across.  It kind of horrifies me to think of people feeling sorry for me.  I would hate to think people did.  This is partly just because I grew up in a time and place where you just didn't do that, and partly because I don't feel like I have a life people should feel sorry for.  I have enough to eat, a roof over my head, a husband I love, amazing sons, a daughter I longed for for years, hobbies and friends and interests and books and my garden and so many great things.  Like anyone, I have moments of self-pity, moments I do maybe want people to feel sorry for me, but that isn't why I write here.

But I was left thinking---why DO I write about how hard things can be with Janey and how little support there is out there, if not to make people feel sorry for me?  I had to search my soul a lot on that one.  The answer is---I write about it because it's an experience, a life, that I don't see written about elsewhere.  I don't see the media writing about kids like Janey, kids with the non-glamorous kind of low functioning autism.  Because of this, I also don't think there is a lot of awareness outside of the families with kids like Janey of how hard things can be and how little support there is out there.

There is a debate I've had with myself, and talked to others about---are those with the power to do something to help families like ours just ignoring our needs, or are they truly not aware of them?  I have to believe they aren't aware of them.  They could be excused in this.  Let me give  you an example.  Over and over, I've had people tell me about two different programs.  One is a program at the Boston Conservatory that provides music lessons for children with autism.  They hear about it and think "Wow!  That would be perfect for Janey!  She loves music and is very musical!"  Well, yes.  It would be perfect, except that the program requires that the child already be able to play an instrument and read music.  Janey certainly can't do either of those things.  The second example is a respite care house near here, a wonderful place we did take Janey to and get her accepted into it.  It would be wonderful, with Saturday respite and overnights and all.  However, when we took her there, we realized that the ratio of caregivers to children was no-where near what would be safe for Janey.  She requires a 1:1 ratio, for sure, sometimes even 2 adults to her if you really want to be safe, and they were more like 5 to 1 or 10 to 1.  Not possible.  So---to the outsider, it might seem there are programs and help that would work for Janey.  I want to explain to them that although these programs might be well-meant, and extremely helpful to some kids, they do us no good.

I talk about Janey's difficult behavior here for similar reasons.  I had no idea, no idea in the world, before having Janey, what it is like to have a child like her.  It's a bit of a hidden world.  There are several reasons for that.  One is that most of us living this life are too busy caring for our kids to really get out there and tell our stories.  Another is that we don't want to be negative about our kids.  We love our kids.  We love them so much it's hard to ever explain.  In a way, we love them so much we want to shelter them.  We don't want to let people know how hard it is to raise them.  And so, the stories that do come out are often horrible stories of mothers who just could no longer continue.  Or they are feel-good stories, stories of "cures".  Or they are tragic stories of children who wander away and drown, the stories that are far too common, especially in the summer.  I want to tell the story of a regular, ordinary family raising a child with low functioning autism, an intellectual disability and severe behavioral and self-injury issues.  I want to show that we aren't the others.  We are any family out there, who by the luck of the draw were dealt a tough hand in this one way.

I write because that is what I can do.  Others can do other things.  I am no good at going to rallies, at being a fierce advocate, at raising money, at starting foundations.  I can write fairly well, and I can do so in-between Janey's tantrums (I wrote this interrupted by at least 10 fits of fury from Janey, as she watched videos and became upset by them).  I write to tell our story, and the story of so many wonderful families I've met with children like Janey.  I write to tell people we exist, and to hope somehow to plant a seed in the mind of someone with the power to help us.

My surprising thought, twice this weekend

Twice this weekend, I had a thought that I don't usually have.  I thought "I'm glad Janey is autistic".

I hesitate to even write what I wrote above, for a million reasons.  A few of them---I don't want to ever be a Pollyanna, someone saying that autism is a blessing.  And the inverse---I don't want to say that I usually don't want Janey to be who she is.  My usual state of thinking goes along the lines of wishing that Janey wasn't affected by the tough parts of autism.  Autism hasn't been terribly kind to Janey.  She is not one of those autism poster children, the kind that I think are pretty rare in real life, the kind with futures so bright you have to wear shades.  Autism has taken away much from her.  But that doesn't mean that she isn't an amazing person, someone I value very much just as she is.  But feeling glad she's autistic?  No, usually not.

So what happened this weekend?  Well, first, I realized that despite my burying my head in the sand, soon both boys would be out of the house.  We put the deposit down for Freddy to go to Skidmore College this fall.  He went to visit for three days there, a preview of life without him home.  Next year, come September, both boys will be in college.  It's harder than I ever pictured it would be to face that.  Of course, I am thrilled my boys are going to college, to colleges that will challenge them and allow them to explore their interests.  William loves Brandeis, and I think Freddy will love Skidmore.  But they won't be at home, and selfishly, that is very hard for me.  I loved being the mother of teenagers.  It will be very, very quiet without them.  And then I thought---this probably won't happen with Janey.  She isn't going to leave.  We get to keep her home.

It's a sign of how Janey's moods change that during her worst times, the thought of her being home forever leads me to despair.  But she's in a sunshine mood lately, and I have become by necessity very good at putting aside bad times when times are good.  When Janey is happy, none of the rest matters.  It doesn't matter that she isn't toilet trained, that she has a hard time talking, that she has very few academic skills.  It only matters that she is my daughter, my funny, unique girl.  Now, a few weeks from now, when the screaming and sadness most likely will have returned, I know I will feel differently.  I'll still love her desperately, but I won't feel as optimistic.  But I'm talking about how I feel right now.

Not our actual soup, but something like this!

The second time I had the "I'm glad Janey is autistic" was a littler thing.  Tony had made up a big soup of various vegetables.  We get a bin of organic fruits and vegetables every week, and he loves trying them.  He was sharing with Janey, and noted, as he often does, that she was only eating the green stuff---the kale and collard greens, not the rutabagas.  And I was thinking how much she loves the foods she loves, and cares not a bit or even knows that most kids don't like what she likes.  I was thinking about her dream mornings on the weekends, watching Tony cook and eagerly eating what he makes her.  And how most 10 year old girls would already be at the stage where a fun morning at home with Mama and Daddy, eating greens, would not be a thrill to the point of dancing around.  And again, I thought "I am glad Janey is autistic"

The truth is, of course, I'm not glad Janey is autistic.  This is because Janey's autism isn't her.  It's something she has.  You don't love a child for things they have or do, you love them for being them.  I don't love my boys for getting into college, for their senses of humor, or even for their kindness to their sister.  I love them because they are my sons.  And I love Janey because she is my daughter.  I love her just for being her.  But at times, I can love, separately, the traits that she has that are partly because of autism.  I can love the life situations that autism creates, like knowing she will probably never leave home.  I don't love autism.  But I love Janey, a girl with autism.

Joy and Lessons

Janey is home, and the overwhelming feeling we have, so far, is joy.  It is wonderful to have her home.  We realized, this past month, what a crucial part of our family she is.  She is our focus, our center, our mission.  Without her, I think all of us felt a little lost.  She is a huge challenge, a huge job, but most of all, a huge joy.

We have, however, learned a few lessons which are tougher to take than the lesson of how we need her.

Janey's release from Bradley was sudden.  Late last week, when both the school and I talked to the hospital, it seemed that her release was not going to be soon.  Then, on Monday, I got a call from the social worker at first asking how our visits were going and then telling me they were planning on releasing her the next day, Tuesday.  I had a huge mix of emotions.  First, happiness, but then, a little confusion and a lot of "what next?"  Yes, she had calmed down.  Yes, her medication had been adjusted.  Yes, the immediate crisis was over.  But most things had not changed.  Janey was still screaming often, biting her arm quite a bit, often upset.  We still had no respite.  We had no new ideas for dealing with Janey, no new plan.  There was not going to be any release meeting.  We didn't speak to the psychiatrist in charge---we had met him only once, at the intake meeting.  Basically, Janey was coming home because her mood had changed.  That is something that has happened at home, without a hospital, many, many times.  We could have done that here.

To play the devil's advocate with myself---we did get some respite.  We had the 18 days with Janey at Bradley, where we were able to sleep all night.  We were able to spend 18 days, when we weren't driving to Providence, doing the kind of things we haven't done for a while---mindless games, mostly.  We probably didn't relax as much as we should have during that time.  We were still in a bit of shock, and we still were thinking about her constantly, and driving to see her often.  But we did have that time.

However, I would have to say overall, I am still quite troubled by the state of our country's mental health treatment for children.  The Children's Hospital time, when Janey was a "boarder", was hell.  I don't have another term for it.  It was hell, hellish.  The Bradley hospital is a lovely place, full of kind people.  I know Janey was treated well there.  But it is an extremely short term solution, and in the end, it changed almost nothing.

There was a moment as Janey was being released when I was signing forms at the nurse's station.  The nurse and the social worker asked me if I had any questions.  I think they could see the look on my face, a look that was that was a mix of concern and something like internal laughter.  Yes, I had questions.  Just where do we go from here?  What I said was "We just wonder if you have some suggestions on dealing with Janey's difficult behaviors at home?" or something along those lines.  The answer was that they had sent a list of their strategies to Janey's school.  The social worker said "You know, we could send a copy to your house if you want!"  Um, yeah.  That might be good.  Although excuse me for saying I don't hold out huge hopes that the list will solve everything.

But I'll end here on a more cheerful note, one more appropriate for this Christmas season.  We HAVE learned something.  We have learned that we are the ones who are the experts on Janey.  It isn't like there are people out there who can tell us how best to help her.  We are the people who know that.  There are places she can go in times of extreme crisis, if we are able to first endure the horrors of boarding.  We have learned that besides that, one of our best allies is the Boston school system---who stood by us during all this, stayed in close touch and showed a huge level of caring for Janey.

And we learned how many wonderful people out there care for Janey---the readers of this blog and the friends we have made through the blog and throughout our lives.  We were blown away, stunned, overwhelmed, by all the thoughts, prayers, support through monetary help and kindness and love and offers to help and notes and emails and just plain love from all of you.  We might feel alone sometimes in dealing with Janey, but we are not alone.  Far from it.  Thank you, from the deepest parts of our hearts.

The Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.