Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.

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!

Writing Raw

I don't normally write when I am feeling raw, when I am not in a calm writing state.  But today I will. I won't get into all the reasons, not to be mysterious but just because it's not always the forum here for that.  But I am feeling discouraged this week, very discouraged.

It's not really Janey's behavior that is discouraging me, but with my other worries, it's the constant grinding feeling of knowing there just doesn't seem to be a place in the world for kids like Janey.

I put an article from the New York Times on my Facebook page---here's a link to it--Link  It's just one thing in a long list of endless things, but it upset me.  It talked about a new program in schools for kids with autism, a program that in many ways is like the school Janey attended for the first 5 years of schooling, an inclusion program.  I liked what it had to say, until I read the line that said "To get into the program, children must be deemed capable of doing grade-level work"  Yeah.  Okay.  Like so many other programs supposedly for special needs or autism, kids like Janey are specifically excluded.  This is something I find over and over and over---camps and lessons and special events and on and on and on that simply don't want to deal with a child like Janey (or if I am being kinder, would like to deal with her but just don't have the resources)

And I will get really cranky here and say I'm sick of hearing that, basically, intellectual disability doesn't exist in autism.  It's not something I hear directly, but something that is often implied.  I am the first person to say that I know Janey has many, many strengths.  I know she understands more than she lets on.  I value her extremely much, AS SHE IS.  It is not necessary to make her something she ISN'T to value her.  She is a child that has a very significant intellectual disability.  It's fine if people choose to not accept that.  But they can't choose to not accept that but then still think they are helping all kids with autism.

What if I said "Janey IS capable of doing grade-level work!" and tried to put her in a class like the ones in the article?  Because, who knows?  Maybe she somehow is!  I can just imagine how that would go over.  It would not.  The truth is, what someone might be capable of is not, in practical daily life, that important.  She could not function in a class like the ones described.  I am not just guessing this.  She used to be in a school with classes like the ones described, or actually, a school far MORE inclusive than the ones described, classes that did welcome kids with intellectual disabilities, but were not able to deal with the full range of autism's challenges.  I wish she still could be at that school..  But she can't, and the school was right to admit she couldn't.

And there are so, so many other things like the inclusion classes the article talks about.  If you ever want a good laugh, do a search for camps in your areas that say they accept kids with special needs or even more specifically, kids with autism.  And then look at the details.  There is almost always a rule saying something like "child must be able to function in a 5 to 1 child to adult ratio", "Child must be able to safely follow routines"  or even "Child must be fully toilet trained"  I'm overstating a bit here, but if camp fliers were honest, they might say something like "Children with special needs accepted as long as they don't have any needs which are beyond those of other children"  Or in other words, special needs children are fine if they don't have special needs.

To me, whenever I feel that the media isn't presenting a full picture of children with autism, when voices of parents like me are silenced because we are "speaking for our children and not letting speak for themselves", because we are "portraying autism in a negative light"---well, to me that feels like the truth of Janey, the truth of children like her is something that is being hidden, something that is somehow too horrible to talk about.  And it isn't.  Janey is an amazing person.  Almost everyone who has met her is drawn to her.  She is amazing AS SHE IS.  She is amazing not because she might have mysterious hidden abilities, she is amazing WITH intellectual disabilities.  And WITH occasional self-injurious behaviors.  And WITH incomplete toileting skills.  And WITH aggressive behaviors when she is very upset.  And WITH very limited speech.  She is amazing as she actually is.  And I will fight until my last breath for children like her to be included, truly included.

How girls and boys with autism differ....a collection of links

In response to a question on the Facebook companion page to this blog (thanks, Ragon!), I decided to look at various articles about the differences between girls and boys with autism, and give a list of links.  I'm not endorsing the articles here by including them---just trying to provide a variety of takes on the topic!  Three big points seem to keep getting mentioned---of course that less girls than boys are diagnosed with autism, that girls with autism tend to be diagnosed later, and that girls show autism differently, with less repetitive behaviors and more typical special interests.  There's a lot of talk about the brains of autistic girls and boys being different, and some about how the ratio is less skewed in children with intellectual disabilities.

If you have any articles you've found useful I didn't include (there are MANY out there!), let me know about them---I will probably do another post like this at some point.


http://www.autism.org.uk/about/what-is/gender.aspx

A pretty good piece.  It cites a lot of research, and does talk about how when there is an intellectual disability as part of the autism, the ratios get closer to 1 on 1.  But also a lot about how Aspergers type autism is harder to see in girls.

https://med.stanford.edu/news/all-news/2015/09/girls-and-boys-with-autism-differ-in-behavior-brain-structure.html

About the brain differences between girls and boys with autism, and about how boys tend to have more repetitive behaviors than girls.

http://www.icare4autism.org/news/2012/04/differences-in-autism-symptoms-for-boys-and-girls/

A short general review, including notes on how girls are more affected academically than boys, but tend to have less sensory sensitivities and repetitive behaviors.

https://www.verywell.com/differences-between-boys-and-girls-with-autism-260307

A list of differences between boys and girls with autism.  It mentioned as do several other articles that when girls have a special interest, it tends to be more typical than boys special interests--for example, being into music rather than train schedules.

https://www.scientificamerican.com/article/autism-it-s-different-in-girls/

This is a longer and very interesting piece, although it does have a lot of the "girls with autism are harder to notice" type talk.  But it has a lot of fascinating ideas, like that girls with autism have brains that are more like typical boys than like boys with autism, and the idea that it might seem like girls are more severely affected than boys because it takes more clear-cut autistic behaviors for a girl to get diagnosed at all.

http://www.cnn.com/2012/04/04/health/mental-health/autism-sex-differences/

Talks about the differences in ratios in more pronounced autism, and about how sometimes autism in girls can show itself as severe shyness

http://www.health24.com/Medical/Autism/About-autism/girls-and-boys-have-different-autism-profiles-20161027

An interesting note about how girls and boys with autism both often have the same genetic mutations, but girls need twice as many as boys for the autism to be manifested.

https://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/?utm_source=SFTwitter

A long article that is quite well done, with three girls showcased, each with a different level of functioning and different issues as a result.  Talks about how girls are diagnosed later, as a rule.  A personal note---tells about a US researcher with a $13 million grant to study the differences between boys and girls with autism.  I hope there are some blockbusters findings from that study, as $13 would certainly go a long way in providing respite and recreations activities for the girls affected.

https://iancommunity.org/ssc/girls-autism-hiding-plain-sight

A lot about how girls with autism appear more typical than boys...but with the interesting note that girls tends to show more autistic behaviors at home than at school or elsewhere in public.

http://raisingchildren.net.au/articles/autism_spectrum_disorder_in_girls.html/context/1037

This is a good summing up type article, with a lot of the points other articles raise in bullet form.

The season titles and other communication breakdowns

I'm lucky that in many ways, I'm able to communicate with Janey.  Her understanding of what we say is far better than her speech.  I can tell her something like "go in your room and get a shirt, then get your shoes, and we'll put them on to go for a walk" and she will understand and, if motivated, do what I've asked.  She can ask us for food she wants, for rides, for the bathroom.  She uses gestures to tell us things like "get out of this room so I can watch my show!" or "move your legs so they are in a position that's acceptable to my OCD!"  But sometimes, some concepts and ideas just don't seem possible to explain to her.

A big one that has been a problem for years now happens when Janey wants to watch a video on Amazon Prime TV.  The way their interface is set up, if they have multiple seasons of a TV show, there's a season title block at the start of each season.  This block is the same size as the TV show blocks, and you can highlight it like you do a show.  However, clicking on it doesn't do anything.  It's just something saying "The following episodes are from season two" or whatever.  

Janey is bound and determined to watch the non-existent shows that she thinks are associated with the season titles.  She'll gesture wildly to show me she wants to watch "Season Two".  I've been working hard on teaching her to use the remote to get the shows she wants, and although she's not very into it, she'll try in this case, moving the cursor to the season title and clicking the "A" button.  Of course, nothing happens.  And she starts screaming.

I have explained every way that I can possibly think of to tell her that these aren't show, that they will never be clickable, that they just tell what season we are in.  Frankly, I don't think she'll ever get it.  She doesn't know TV shows come in seasons.  She doesn't get why some blocks would lead to a show and others wouldn't.  She simply thinks for some reason of our own, we aren't letting her watch those shows, and she wants to see them.

This might seem like a little thing, but it's an example of one of the very hardest parts of raising a child like Janey, for her and for us.  We can "assume understanding" as much as we want, we can explain with words and pictures and social stories and charts and examples and all kinds of things, but if it's a concept that is simply beyond her, it doesn't matter.  It's like if understanding string theory somehow came up in daily life for me.  I've tried very hard to read about it, I've watched shows about it and thought about it, but I don't get it and I never will, I daresay.  Thankfully, I don't need to, for regular daily life, but the things Janey doesn't understand do come up all the time.  She asks for chocolate milk when there's none in the house.  She wants to go for a car ride at 3 in the morning or during a snowstorm.  She wants to watch "Hercules" when it's no longer available for streaming or even to buy on Amazon.  She wants to wear her Crocs in the winter.  She wants to not get her hair brushed.  And with all the issues like that, I've done absolutely everything I can to help her understand why she can't, but I truly don't think she is able, cognitively, to grasp the concepts needed.

It's not really autism that is the problem here.  It's Janey's intellectual disability.  Not all kids with autism have an intellectual disability, and sometimes, it seems like it's fashionable to think none do, that it's simply we as parents or teachers or caregivers aren't understanding how to communicate.  I'm sure that's sometimes the case, and maybe often, but sometimes, it isn't.  I feel strongly that to respect Janey is to be realistic. It is not respectful of who she is to deny parts of her disability.  Being intellectually disabled in no way makes her less.  I won't get political, but anyone who uses the old term "retarded" as an insult is not someone I want to deal with, ever.  It's not an insult.  It's not something unspeakable that we have to pretend isn't the case.  It's reality, just like it's reality that there are things I don't have the capacity to understand or do that other people can do.  It's not respectful of me to deny that, and it's not respectful of those who might try to teach me to say they just aren't teaching right.  It's reality.  And it's hard, sometimes, but it's the truth.

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.

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

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

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.

If I Had Three Wishes...

After this past Columbus Day weekend, which could be renamed around our house "Screamfest '14", I am quite drained.  Janey was happy to get back to school.  She hates long weekends.  I don't know quite how she knows, but she knows that weekends are supposed to be two days, just as she knows when it's quarter to five and Daddy should be home.  Yesterday was one weekend day too many for her, and she let us know in no uncertain terms.  I slept little last night, and today, I've been in a half-dream mode.  It led me to thinking---what would I change about life with Janey if I had three wishes?  And what would I NOT change?

The first thing I'd wish for---No more screaming.  Or, to modify that, only screaming in situations that require screaming.  I wish that for myself, of course, because screaming is very, very hard to hear, and because it limits what we can do as a family.  But I wish it more because of what it means that Janey screams so much.  She is screaming for a reason, whether we can figure it out or not.  I don't want to silence her voice---I want the no more screaming to be because she no longer feels the physical or mental anguish that is causing the screams.  I want to understand what makes her scream, and to be able to help her feel better.

Second wish---no more self-injurious or injurious-to-others behaviors.  Seeing Janey bite herself, hit herself on the head, scratch herself---it breaks my heart.  Again, I want to know the causes of this behaviors, and I want to fix whatever makes her feel she must hurt herself.  I also want her to not hurt anyone else.  I don't want to feel worried when Janey is hysterical that she is going to bite me, or pull my hair, or scratch me---or anyone else.  It's human nature to feel a little nervous about getting into a situation that has led to pain in the past, and I hate it when I'm half scared of being bitten by Janey.  I want her to not need to hurt herself or anyone else.

Third wish---I wish for better sleep, for Janey and for us.  When I've had a good night's sleep, I feel like I can handle this life, and I am sure it's the same for Janey.  When I don't get sleep because Janey is awake, I am overwhelmed and out of hope, out of ideas, out of patience.  If I could count on a good night's sleep every, and if Janey could also have that good night's sleep, well, I can't even quite imagine it at this point, but that's probably because I'm always half asleep.

The flip side here---what would I NOT change?  If I got that magic wand or caught that magical fish that gives wishes, what would I NOT wish for?

First non-wish---I would not wish for Janey to not have an intellectual disability.  That's one I would not have believed, before living this life.  But of all the things that autism has brought to our family, the easiest to deal with is Janey's learning issues.  They really just don't matter much.  I used to, before I had kids, read articles or books about children with various issues, and if they were intellectually normal, I'd think "none of the rest of it would really matter, as long as they weren't SLOW!", like it was the most important thing.  I realize it isn't.  Janey operates as she operates.  We delight in what she shows she knows, but in day to day life, the fact she can't read or do math or write makes almost no difference.

Second non-wish---I wouldn't want to change Janey's personality.  Sure, I'd love it if she was a little less cranky at times, but I can say the same for almost anyone.  I'd like Janey to be happier because that would mean we had figured out what upset her so often, but I don't want her underlying personality to be a different one.  She wouldn't be Janey, then.  She wouldn't be the stubborn, funny, musical, sometimes sneaky, sometimes silly, always surprising girl she is if she had a different personality.  She wouldn't be Janey.

Third non-wish---I wouldn't wish away the autism.  The autism is part of Janey.  It makes her who she is.  I might wish she was a little less affected by it---that she could communicate a bit better, that she could pursue the things she loves a bit more, but the autism itself?  The unique way she sees the world, the lack of any calculated meanness or judgement or jealousy she has, the gifts autism has given her, like her unabashed love of music, the community of other people with autism that she is a part of---how could I ask for that to be gone?  Wanting her to cry less or not hurt herself or sleep with more ease---I would love those to change.  I think that they could change, without changing who Janey is.  But the autism?  No.

I don't have three wishes, but I have my determination to help Janey.  I will try to make my three wishes come true without magic.  And I'll try to celebrate whatever the magic is that gave Janey to us.

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.

Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

"They grow up so fast!"...or not

William has been at college for a week now.  I miss him more than I even thought I would.  It's a strange feeling to have someone you love around every single day for almost 19 years, and then, suddenly, they are gone, and it feels like, well, that's that.  I know he'll be home for vacations and summers, hopefully, but he is the opposite of homesick.  He loves college extremely much, based on the few lines I've heard from him.  And I am very, very glad.  That is how it should be.  Tonight, though, I was feeling sappy and thinking things like "it's so true what they say---they grow up so fast!"  I was thinking of posting something like that for my status on Facebook.  But then I thought about it.  They don't all grow up so fast.

Janey is growing physically, of course.  She is getting older.  She will be a teenager in 4 short years.  But she grows in other ways very, very slowly.  Many things seem at a standstill often.  Her toilet training is improving, but over years, not months or days.  Her speech in many ways ebbs and flows, but doesn't really get better.  She can do things she couldn't a few years ago, but still, in many ways, she's a toddler mentally and developmentally.

Tonight when Janey was crying, I got her to sit on my lap.  I sang to her, smoothed down her hair, snuggled her.  It felt a lot like what you do with a baby.  It was wonderful.  It was a rare time I was almost glad I still have a little, little one.  That feels like the wrong thing to think.  It's of course not that I don't want her to mature.  If she was breaking away from me, if she was starting the road to someday being like William, gone away and glad to be so, I would be thrilled, because that is how the pattern of life goes, usually.  But I don't have a choice about it, and sometimes, with accepting that comes a kind of peace, a kind of happiness that in many ways, I have a child who will most likely be a child forever.

There are many of us out there, I realize more each year.  There are a lot of parents who have a child for life.  They watch other kids breaking away, growing up, moving out, getting married, having grandchildren for them.  They often have other kids doing just those things.  They watch with a mixture of feelings.  There is jealousy, yes.  I think most of us would admit to some of that.  There is envy, and there is astonishment, that for so many children, becoming an adult happens so easily, seemingly without effort.  But there also comes, with time, a feeling that we are living a separate but not inferior type of life.  Our kids are not on the same tenure track.  They are living a parallel life path, one that doesn't have a childhood expiration date.  And over the years, slowly, that becomes its own reality.  I am not there yet.  I still wish, sometimes, or maybe a lot of times, that Janey was following the more typical path.  But tonight, as I miss my oldest, I treasure my youngest, and I am glad, for flashes of moments, that she does not grow up so fast.

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.

The other frustration

Lately I've been experiencing what for me is a new kind of frustration with Janey---frustration with her intellectual disability.  I can honestly say until this point, I was not bothered by her retardation.  I still am not, nearly as much as I am with the autism and the resultant behaviors, but I'm starting to feel that frustration, just a little.

Mainly, it's just not getting how she learns, or how she doesn't learn.  A good example is an app she was trying to do on the iPad last night---Jumpstart Preschool.  It's a little beyond her, but she's interested in it.  There was a matching task---you click on kites or umbrellas or something, which reveal a capital letter, and you need to find two that match, like Concentration.  She seemed to somewhat get what it wanted her to do, but she couldn't seem to get that she needed to try new kites if the first two didn't work.  She sat there clicking the same two kites for about 15 minutes.  I didn't jump in to help---I was trying hard to not do so, to see if she'd get it.  I don't think this was a case of stimming with the sounds.  I think she really wanted to do the matches, as when I finally jumped in and did one for her, she was delighted.  But she didn't or couldn't make the mental jump that would have told her---you need to click around to find the right letters!  Today, we were trying a math program her school uses---First in Math.  They had kind of a trippy game, where a slot machine looking bar showed something like two blue stars.  Floating around below it were all kinds of shapes in different colors.  You had to put a blue star with the other two blue stars.  Janey did understand this, and a few times, did it perfectly.  But other times, she put a shape over the shapes that were already there (which I don't think the program should have let you do) and then, she seemed to be totally thrown off, and kept putting the right shape over the wrong shape in the area where she'd get no credit for it.  She would do the same thing about 10 times, without seeming to realize that she had just done it right a little earlier.

Both those cases show the frustrating part.  It wasn't that Janey didn't get what the task was asking, I don't think.  But she wasn't able to make the mental corrections and steps to get it right.  It might have been a matter of motivation, but I don't think so---in both cases, she liked a lot how the program reacted when she got it right.

It struck me watching this that I would never, ever be a good homeschooling teacher for Janey.  I've realized this with my boys (although they made it very clear that had no desire to be homeschooled!)  I get frustrated far too easily.  I don't know how to teach, especially how to teach Janey.  There is probably a method that would work better than ones I try, but I don't know what it is.  And I just start thinking "How can she not get it?" and I know that's mean.  She doesn't get things because her brain is not set up to get them.  I don't believe it's all hidden in there someplace.  I think her brain has severe functioning problems.  She is able to use the parts of her brain that aren't as affected---rote memory, for a big huge one, and music, and gross motor skills and even fine motor skills in terms of technology---it was not that she couldn't manipulate the mouse at all.  But she can't learn new patterns easily at all.

I can accept in myself that I get frustrated with the autism.  No-one on earth, I don't think, could hear Janey's hourlong screaming spells and not be upset.  But the learning delays---I feel like I should have more patience.  I feel horrible that I get frustrated with that.  I guess it's an area where I should instead feel very grateful to her teachers and therapists, who have the patience in that area I do not.  And I do feel that gratefulness, but I wish I had that gift, the gift of teaching.

Growing out of autism?

This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis.  It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start.  But it certainly caught my interest.  In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic.  And Janey, of course, is severely autistic and I am pretty sure always will be.

You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this.  The study only accepted diagnoses from experts in autism.  Both my kids were diagnosed by fairly well known leaders in the field, so that counts.  But there are huge difference between them, and were from the start.

The big, big, big difference is cognitive ability.  Janey is intellectually disabled.  There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed.  She didn't walk until she was 2.  Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids.  She even was/is delayed in physical ways---she didn't get teeth until after her first birthday.  William was never cognitively delayed.  He spoke at an incredibly early age, and he was obviously quite a bright kid from the start.  I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.

Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't.  It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey.  We may have used that to react differently to him. I don't think so, but it's possible.  Janey blindsided us at age 3.  She has early intervention, but it was only for her walking delays.  It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.

The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert.  I think he had a collection of traits that made him appear autistic.  Part of that is just personality.  It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz.  He's a hard worker, and he gets very involved in what he loves doing.  That showed up early.  He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things!  And as you grow up, having the ability to get very into things isn't bad.  It is what makes experts, professors.  It's probably what has resulted in most all great inventions and steps forward in history.  I think autism is something that shouldn't in some ways be diagnosed until around age 7.  Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment.  They should.  But do they have to be called autism that early?  By the time a child is 7 or 8, it will be obvious who is autistic and who isn't.  Janey is autistic.  There is zero doubt there.  William isn't.  There is zero doubt there too.

The other message I want to put out there is that I didn't do anything magical to make William not autistic.  I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that.  I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life.  He was the one that changed.  I didn't make him change.  That sends me a message about Janey.  I am doing the best I can for her, but I don't think there is some magical key that will unlock her.

I look forward very much to following this study as more information comes out.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.