As Janey nears adulthood

 I've had a very hard time getting myself to write a blog entry lately.  I think this is because next month, Janey will be 18.  She will be an adult.  It's hard to believe, as is the case with any child turning into an adult.  But in Janey's case, it's more bittersweet than it is with most children.  

I keep feeling like I need to somehow sum up Janey's childhood, to tie it up in writing.  And of course I can't.  And of course also, her 18th birthday is just a number.  To her, it won't make a difference.  She doesn't understand what it means, in any way.  To us, it's going to change things mostly just in that we need to get legal guardianship of her.  It won't change our daily life at all. But still---it feels like a milestone, or in some ways, like a deadline that has run out.

I guess there are two ways we can view Janey's childhood.  

One way, the more positive way, is that it's been a journey to acceptance, to understanding.  I can say a few things completely honestly.  Janey's intellectual disability, which is very significant, seems completely unimportant to me in terms of how I see her.  I don't think it means a lot in terms of who she is, her core personality, her Janey-ness.  I can also say that she is a joy to us, that Tony and I can't picture what our life would be without her, that we love her as much as it's possible to love someone.

I noticed as writing that last paragraph that it wasn't really about Janey.  It's about our feelings toward her.  And that is mostly because I truly have no idea how Janey feels about her life.  But I hope she would also say that as the years of her childhood went by, things got better.  We came to understand what she liked and what she didn't, we got her into schools that increasingly valued her and made her days interesting, we learned what we could ask her to do and what she wasn't going to be able to do.  I hope she is content with her life at this point.

The other way to view her childhood is, well, in some ways a tragedy, a failure.  I don't say that because it's how I feel about it, but looking at it from the outside, I am sure that some might.  She went from a two year old who talked a lot, and who despite not walking until very late, seems destined to be a typical child, to a near 18 year old who has never, ever recovered speech after her huge regression to anywhere close to her two year old level.  Academics have never really kicked in for her.  She might know a few letters and numbers here and there, but she can't write, can't read, can't do any math.  She speaks in familiar phrases, with very few exceptions.  She isn't toilet trained completely, she struggles to dress herself, she will never be able to live alone or hold a job.  She is not one of the autism-overcoming success stories that inspiring books or articles tell of.

But maybe there's a third way of looking at it.  I thought of this when seeing Facebook posts about girls she, long ago, was in preschool with. They were graduating from high school, going to proms, being valedictorians, getting accepted to college.  I might have thought, once, that this would be hard for me to see, but, in total honesty, it wasn't.  I was happy for those girls, very happy.  I didn't think about how Janey wasn't doing those things.  What kept coming into my head was "They are living their path.  Janey is living hers"

None of us live with any guarantees or certainties about how our lives will turn out.  No-one can say, when holding their precious newborn for the first time, what path that child's life will take.  What if we radically accepted that, if we were able to just celebrate what our child does do, what she brings to the world?  I'm saying this while fully admitting I can't do that totally.  Part of the reason, much of the reason, is that I don't know if Janey wants her life to be the way it is.  I just don't know that.  I will write more about my thoughts on that in another blog entries, hopefully soon.  But I will say it's not really up to me, it's not something I should say, to decide if Janey's life is a triumph or a tragedy or somewhere in-between.  And I think a source of much of my sadness when thinking about her life is that she herself can't tell me that answer.

So---I can't sum up Janey's childhood.  But I'll say this.  It's been quite a ride.  And I know it will continue to be so.  And I will continue to write about it, maybe more than I have lately, because autism doesn't end with the end of childhood.  Janey, we will be with you as long as we draw breath, and we very much hope we can give you the adulthood you deserve.

Thinking about Rosemary Kennedy

I just finished reading "Rosemary--The Hidden Kennedy Daughter" by Kate Clifford Larson.  It's a very well written and fascinating account of the life of Rosemary, the eldest daughter in the family that included JFK and Teddy Kennedy.  My mind is swirling with thoughts about the book and her life.

There were really two lives of Rosemary.  One is before she had a lobotomy, one is after.  Before, she was what I'd call mildly intellectually disabled.  Certainly she could do many things Janey can't---read at a 4th grade level, write letters, talk quite well---she functioned well enough to be presented to the Queen of England without anyone realizing she had a disability.  But then, as she entered her early 20s, mental illness started to complicate her life.  She became angry and aggressive, and it became harder and harder to accommodate her needs.  Tragically, her father decided to have her undergo a lobotomy, which went horribly wrong.  After that, Rosemary was severely physically and mentally affected. She did recover slightly in some ways, and occasionally did speak in sentences, and although she lived out her life in a house on the grounds of a nursing home, cared for by devoted nuns, starting about 20 years after the procedure, she did quite often visit her family and was part of their lives, until she died in her late 80s.

Several things struck me very much about her story.  One of them is how even having all the money and power in the world wasn't able to substantially change her functioning.  Sometimes I think "if only I had the money to get Janey the very most cutting edge care, all the devices and lessons and private schools and aides I could imagine..."  But in reality, I truly feel that most of us, Janey and Rosemary included, learn what they are able to learn and do what they are able to do if they are loved and given the chance.  You can make sure they learn what they are able to learn, but you can't really change what that level of ability is.  When I look at other kids I've met at Janey's schools, I see that.  Some make tremendous progress.  Some don't.  They are given the same kind of teaching, the same kind of opportunities, but in many ways, we are all going to be who we are going to be.  And that's not a bad thing, necessarily.  It leads me to what Rosemary didn't seem to get from her parents---acceptance.

Rosemary was moved from school to school, from program to program, in hopes of making her "normal".  When I look at what she was in her early life, I have to admit I think I'd be thrilled if Janey was able to do the things she could do.  But I don't think it ever was considered to just work with what she had, to say "let's find a way to give her a good life with the abilities she has right now"  I wonder if that had a part in her lashing out eventually.  I think about what it must feel like to be constantly pushed to do or learn things that are beyond one's ability.  If someone decided to spend all their time trying to teach me calculus, or even legible handwriting, or gymnastics, or hairdressing, or a number of things I can't do and I honestly don't think I'm capable of doing, I can't even imagine how upset I'd feel after just even a few hours.  If this went on for years, I think I'd be very, very ready to lash out in any way necessary to get it all to stop.  I don't blame her parents.  In many ways, they were ahead of their time.  They wanted to give Rosemary the best life they could, and in their time, that would be by making her not disabled, and like so many desperate parents, they did everything they could to try to do that.

There's a fine line, of course, between teaching someone what they CAN learn and not pushing them to do what they CAN'T learn.  I know it's sometimes impossible to know where that line is.  But I think our kids let us know.  Janey learns eagerly, when she is able to.  I have to trust her enough to believe that she isn't trying NOT to learn.  I have to believe that the fact she can't read or usually talk in full sentences or be completely toilet trained after many, many years of working on those things means that to some extent, there is a reason she can't learn those things.  It's not giving up to admit that, I don't think, any more than it's not me giving up that leads me to say I'll never be a mathematician or a gymnast or a hairdresser.  It's a matter of deciding whether to go with strengths or not.

In the end, although Rosemary's life story is very sad in a lot of ways, I was hugely touched by something her sister Eunice, founder of Special Olympics, said in a speech in 2007 "Tonight, I want to say what I have never said before: more than any one single individual, Rosemary made the difference"  She was referring there to her influence on her brother's presidency, but in many ways, the fact that she was part of a hugely influential family who devoted much time and energy and money to helping the disabled means that she made a difference for probably millions of lives.  She mattered, as does Janey, as do all our daughters and sons with disabilities.

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.

When people can't see the delight

Janey had a physical today.  I like my pediatrician a lot.  He has been very good to my family over the years.  He saw each child on the very day they were born, and it was exciting today to have him see William as an adult, ready to go to college---great to have him see how far William has come, and to have him see the fine young man Freddy is too.  But something bothered me a little about the visit.  I couldn't quite put my finger on it at first, but I think I have it now.  I don't think he can see the part of Janey that is a delight.

To be fair, Janey generally screams all through doctor's visits.  She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like.  He doesn't often get to see Janey happy.  But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!"  Tony and I were excited.  And he was kind to her, but he didn't seem charmed.  When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are.  I know he worries about us.  He said as much, and I think I saw tears in his eyes.  He's a very kind person, and he cares for us.  And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey.  She is probably one of the most disabled patients he has.  She is also probably behaviorily one of the most difficult.  There have not been that many moments of triumph with her.  She hasn't made exciting huge jumps.  She is not a classic success story.

But she is so often, in so many ways, a delight.  And many people do see that.  Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be.  Not always, not even mostly, but often.  She can make us happier than almost anyone when she is happy.  She is funny, she is spontaneous, she is often a blast in her own way.  She can make us despair, sure.  Often she does.  But sometimes she makes us laugh until we cry too.  After the appointment today, we went to get some food.  Tony took her to Burger King, and I went with the boys to a burrito place.  She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!"  We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture.  She knew we found her funny, and she was playing it for laughs.  Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.

I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy.  And it partly is.  She has made our lives often very, very, very tough.  She is not happy much of the time.  She will almost certainly never live on her own, never hold a job, never be able to be unsupervised.  She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully.  But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that.  I know not every can, or will.  To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own.  But I've learned that a child like Janey is not a tragedy.  She is a person, a child, my child I love.

Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself.  The smile in the picture says what I want to say more than my words do.