Looking back on the decade

The end of a year, and in this case, the end of a decade, always prompts us to look back.  I've been doing that a great deal lately.

If I look at 10 years ago now, when Janey was 5, we were heading into some very tough years, years in which Janey was very unhappy and often very angry.  It's hard thinking about those years.  I wish I had known then that things would get as much better as they have.  Janey still is sometimes sad, sometimes angry, of course.  We all are.  But so much more of the time, she is happy, or at least contented.

In thinking about this, I've been thinking about causes.  What made those years so hard for Janey?

One of my leading theories is that during the worst years, the most attempts were being made to teach Janey academically.  Via ABA and classroom work and also at home by me, she was spending lots of her time working on things like letters, numbers, writing and reading.

These efforts were not successful.  At times, Janey seemed to learn a little, to know a few letters or numbers.  At one point around 2nd grade, she could write her name.  But these skills would fade away quickly if not constantly practiced, and sometimes, even when they were constantly practiced.

For a lot of kids with autism, this isn't the case.  I have seen myself the amazing things many kids in classes with Janey have learned.  And of course, we didn't know in advance that Janey wasn't going to be one of the academic achievers.  But I think it could have been predicted a bit more than it was.  I think of how extremely frustrating it must have been for Janey to have to work so much on things that simply were not something she could or wanted to learn.  When I think about that, it's no wonder she acted out so much.

How could it have been predicted?  Maybe by an IQ test.  And I will stop right here, right now, and say I know that IQ is not the only way to measure intelligence. In many ways, Janey is very, very smart.  But IQ tests do measure a specific kind of skill.  It can be said that Janey couldn't be tested accurately, but that in itself is telling.

Janey's IQ was tested at least three times, mostly through studies she was in. I was never given a number.  I guess people thought it would upset me, or that it was meaningless.  But I know she scored lower than the 1st percentile.  I know her IQ is very, very low.  Again, and importantly, NOT her intelligence, but her IQ---a specific kind of skill set.

From my understanding, IQ tests were first developed to understand potential, to see what kind of teaching and classes would be helpful.  I think we could have known early on,based on tests that were done, that what Janey needed was not academic work, but work on her life skills, and most especially work on helping her enjoy the things she IS good at.  I understand in a lot of ways why schools do keep trying to teach Janey and others like her academic skills.  A lot of it is No Child Left Behind type thinking.  But a big part of the reason is hard to put into words.  Trying to, and being blunt, it's that our society places a low value on people with low IQs, people whose strengths are not at all academic.  We try very, very hard to turn people like Janey into someone we feel has more value.

And Janey suffered because of this.  It was not just the school, but also us, at home.  We tried to teach her many things that were beyond her.  We tried to get her to talk more than she was able to talk, to be more perfectly able to use the bathroom than she was able to, to understand rules and rituals that were beyond her.

In our case, it was a dramatic event which changed things---when we almost lost Janey to a burst appendix.  It's the big dividing line in our heads, when we realized how truly precious Janey was to us exactly how she is, when we stopped putting value on what we HOPED she would do and started putting value on what she CAN do, on who she is.

For every child with autism, for every child without autism, for every child at all, there is a different path.  Until our society values people like Janey, we probably will keep trying to put all children on the same path.

What will the next decade hold for Janey?  I hope it holds happiness.  I hope Janey is content with her life.  I hope that for all of you, and all your children.

Happy New Year.

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

The word we don't say anymore

Even when I started writing this blog, about 8 years ago, it was still marginally acceptable to use what I will now call the "R" word.  Now, the acceptable term is "intellectual disability".  In many ways, that's a better term.  The R word meant behind, and implied that those it referred to would someday catch up.  Intellectual disability doesn't have that implication.

In general, I am not too hung up on semantics.  Part of the reason is that it often takes quite a while for the general public to catch up with those in whatever community it is that creates the word.  It is sometimes easier just to tell people straight out---"Janey is ....."  I have done that, a few times.  Generally, I resort to that when I heard something along the lines of "But all kids with autism are really, really smart!  You just need to unlock it!  Have you tried (insert latest hip treatment here)?"

However, as the years go by, I realize that both the incorrect term and the more correct one are pretty meaningless.  Yes, in many ways, Janey is intellectually disabled.  There is no question there.  Despite many, many years of teaching, she doesn't know her letters, or numbers.  She can't read or write, or really use a writing utensil at all.  She speaks mainly in short, familiar phrases or echolalia.  If her IQ was able to be tested, it would be very low.  But those academic areas are just a small part of who she is.

I don't like to think about it, but the truth is, before I had kids, I thought having a child that was the R word would be the one thing I simply couldn't deal with.  I would guess a lot of people think that.  I felt it would be the ultimate tragedy.  Now, I can say with complete honestly that I was wrong.  In day to day life, Janey's intellectual disability makes little difference in her life.  It matters far less than her happiness, her health, her safety.

I also get now that there are many, many kinds of smart.  I often say to Janey "You're so smart!" and totally mean it.  She is smarter than I am in a lot of ways.  She dances far better than I ever will.  She is good at using the computer and iPad.  She can run a lot further than I ever could.  She has more sophisticated taste buds.  She is less socially anxious.  She is a million times more musical than I am.  She has a wonderful sense of humor.  She has more fashion sense than I do.  I used to think, honestly, when people said there were many kind of intelligence, they were saying that to somehow cover up the fact that whoever they were talking about didn't have "real" intelligence.  I hate it that I used to think that.  It's not true.

So, you might ask, why even admit, why address the fact that Janey does indeed have an intellectual disability?  Well, because it does make a difference in terms of what the future holds for her.  I believe in living in reality.  The kinds of smart Janey has are not the kinds of smart that will make her able to succeed academically.  She will never get a high school diploma.  She will never go to college.  And beyond academics, she will never hold a real job, or live on her own.  And I hear already a chorus, probably mostly from my own mind, saying "You are assuming a lot there!  Don't you have hope?"  And the truth is, at this point, I think reality is more important than hope, at least hope for things that there are a vanishingly small chance will ever happen.

There are kids with autism, including non-verbal or low verbal kids, who don't have an intellectual disability.  That is extremely important to keep in mind.  But I think it's also important to admit there are kids that are indeed intellectually disabled. Sometimes, I feel like at some high level, it might be almost a conspiracy to not admit that, because not admitting it lets us as a society not truly deal with a future that is coming.  Janey will need lifelong care, and so will many, many others like her.  We can hope that isn't the case all we want, but it's reality.  Until we admit that as a society, we will not be planning for it.

In a bigger sense, I wish everyone could realize what it took having Janey for me to realize.  Being intellectually disabled is NOT A TRAGEDY.  It's not something so horrible that we have to pretend it doesn't even exist, have to say that somehow it will magically go away in the future.  It's not the end of the world.  Janey is one heck of a terrific person, despite being the word we don't say any more.

My terrific Janey

How Janey's brothers see her

Janey is extremely lucky to have two amazing brothers.  William is 10 years older than her, and Freddy is 7 years older (to the day!)  I often have thought how much harder our lives would be if Janey was our first or only child.  I can't tell you what a help the boys have been over the years.  Often it's just the little things, like when I have to run down and change laundry or check the mail---countless times, I've said "Can you keep an eye on Janey for a minute?" and they have stepped up to the plate.  As they've gotten older, if Tony and I want to get out and they are available, they are the only babysitters we use.  We do that very little, partly because they are busy and partly because we can't afford a lot of going out.  When we do have them babysit, we generally pay them, because watching her is certainly a payable job, but they often offer to watch her without pay for special occasions.  They joke with her, play with her, treat her in a brotherly way that is so important for her.  They are great boys.

Over the past few years, on several occasions, each boy has said the same thing to me separately.  They have both told me they truly feel Janey has normal or better intelligence---that for whatever reason, talking and communicating is hard for her, but that they very strongly feel that inside, she is bright.  I take their opinions on this very seriously.  They are not saying it from any position of wistful thinking or from lack of information.  They know Janey completely.  They see the full extent of what she is like---the screaming, the lack of academic progress, the limited talking---all of it.  But through it all, they see something else.  They have both seen amazing things she has done, those once a year type odd moments when she shows a glimpse of what she can do.  They have also seen the day to day demonstrations of her strong sides.  They have seen her learn songs instantly and sing them back, they have seen her figure out complex baffles we have put on things we don't want her to touch, they have watched her easily manipulate the computer and the TV.  And they also see the intangibles---just the way she can look at you, the way she picks up on the mood of a room, the way she subtly knows how to get what she needs from people.

I know a lot of people think I should have more faith that Janey is of normal intelligence.  I know very well that intelligence is not an easily measured thing, and that there are lots of kinds of intelligence, and that autistic kids don't take well to testing.  But I also fiercely need to live in reality.  Janey is nine.  She rarely talks in full sentences (except for echolalia).  She is not toilet trained.  She can write her first name, but nothing else consistently.  If she can read, she generally hides it well.  I have never seen her do even very basic math skills.  She rarely responds to questions.  By most any measure, she is intellectually disabled.  But IS she?  I don't know.  But I know that having her brothers feel she isn't is one of the factors I most strongly am influenced by.

Here's some pictures of Janey with her brothers, just being happy in their presence.  She's a lucky girl to have them, and I am a lucky mother to have all three.

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.