Saturday, March 28, 2015

When inclusive isn't inclusive---the cheery camp booklet

Last week, I went to a presentation at Janey's school, about summer programs, given by people from an autism program at a local hospital.  I hesitated to write this post, because I don't want to put down the people who gave the presentation.  They were earnest, well-meaning and caring.  However, I left feeling like, frankly, their whole presentation had been a waste of my time.


The people from the hospital had made up a very colorful and cheery summer guide.  They made sure we noticed the cute clip art, the little asides and pictures and all.  The core of the guide was a list of 12 camps.  Almost all of these camps were called "inclusive".  A few, instead, were listed as being (and I quote directly from one of them) "for individuals with high functioning disabilities".  One of them said it was for "children with special needs", but then right under that, said "1:3 counselor to child ratio"

As the presenters went through the camps, I felt increasingly depressed.  None of the camps would be a possibility for Janey.  She isn't able to be "included" in the way meant by the camps.  The peppy social stories and advice on talking to counselors would not make her able to attend the camps.  A one to three ratio would never, ever, ever work.

I debated mentally whether to say anything to the presenters about my thoughts.  I know that children in the autism program at Janey's school have a spectrum of abilities.  I am sure many of them COULD go to these camps, and so I decided to keep my mouth shut, to let them get the benefit of the presentation.  Thankfully, one of the autism program directors from the school spoke up and asked the question I had been so much wanting to.  She explained that some of the children in their program had very high needs, and asked if any of the camps on the list would be able to handle that.

The presenters were a little flustered, I think.  They said no, the camps probably wouldn't to able to handle that.  The woman from the school asked if they knew of a camp that could.  They mentioned a camp that "might be able to".  I then spoke up and asked about why that camp wasn't on the list.  They looked at each other uncertainly and said they weren't sure why---that maybe the camp wasn't really for autistic kids.

I am not trying to be mean to these hospital employees.  I don't blame them.  I don't blame anyone, really.  But the guide they gave, and their initial "There's so much out there!" vibe are part of a huge problem.  There is a giant divide between what one of the camps called "high functioning disabilities" and Janey's type of disability.  The general public doesn't, for the most part, understand this.  They might look at a booklet like the camp one and think "Wow!  I almost wish MY child had special needs!  Why do these people whine so much?"

Fortunately, Janey DOES have a summer program.  She goes to summer school right at the same place she goes to winter school---at the public school she attends.  Kids with a very high risk of slipping backwards during the summer get summer school, by law.  The law doesn't say how MUCH summer school they get, though.  This summer, the school will be only 4 days a week, for 5 weeks.  20 days.  The summer has a lot more days than that.  Just a few years ago, the program was 30 days, but I guess our kids, our very high need kids, are not a budget priority.  I wonder if someone up there in the decision-making office thinks "Well, there's plenty else out there for them to do in the summer!" while looking at the same cheery little booklet I am.

I want to end this with a huge, giant, heart-felt thank you to the teachers, aides, program directors, ABA therapists and more that work at Janey's school (and those who worked at her old school and worked for so many years to practice true inclusion).  They don't get the glory, but they are the ones that truly do accept everyone.  Inclusion, in my new thinking of the word, means being able to say "Yes!  We welcome your child!  We will meet their needs!" And it matters to me really not at all if this is in a classroom or camp with no "typical" kids at all.  I'd rather have her accepted than not included in "inclusion"

Wednesday, March 25, 2015

A thankfully rare memory of rude people!

Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student.  I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours.  The leader of the group asked him to write about a memory that stood out from his childhood involving Janey.  He wrote about a time I remember vividly.  Here's what he wrote...

Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.


 I remember so much about that awful meal.  The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here.  Janey was being so good, I was thinking at the time.  She was sitting nicely, eating, and talking away.  We loved then and love now when she gets into one of her fairly rare talkative moods.  As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise.  The family suddenly got very quiet.  They all started staring at Janey.  This wasn't any subtle stare.  It was an all-out stare, like, as Freddy said, they were watching an alien being.  Then they started the whispering---taking a lot at her, whispering to each other and then taking another long look.

What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids.  I remembering hoping against hope that the boys were not noticing what was going on.  However, before we finished eating, they both asked to go.  I was happy to.  We gathered up our food and went to the car, Janey happily holding our hands.  For once, I was very glad she was oblivious to all that was going on.

In the car, both boys burst out in anger.  They were furious at the family.  And I found myself completely unable to disagree.

What strikes me is how unusual this scene was.  I've had people say something nasty to me about Janey maybe three times ever.  I've had people notice her and look sad somehow.  I've had people ignore her.  But I don't really think I can ever, ever think of another incident of people staring and whispering.  And that is good.  Maybe Freddy is onto something.  Maybe the greater Boston area is a good place to have a child like Janey.  Bostonians are fairly tolerant.  They are also generally not whisperers, I'd say!  If they have something to say, they say it.  Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.

I'm thinking in contrast of something that happened this weekend.  Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting.  She reached for the woman's doughnut just as Tony grabbed her and stopped her.  The woman gave us a big smile as Tony said he was sorry.  She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did.  Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey.  That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included.  It takes so little to do that, and I must say, most people are great in that way.

Memory is funny.  I am not sure why Freddy and I, and William too, so vividly remember that awful family.  I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness.  They are the people I want to have occupying my memory.

Tuesday, March 24, 2015

Trying to give Freddy one fair afternoon

Lately, I've been thinking a lot about sibling issues and autism.  I think this has been triggered by the realization that next year, Freddy will be in college.  Of course, I saw this coming, but now that he's gotten some acceptances and some good financial aid, it's hitting me as reality.  And I've been thinking about how very often, Janey's needs come before those of her brothers.

Our family setup is such that it's often come fairly naturally to put Janey first, or it has seemed that way.  She's seven years younger than Freddy to the day (Freddy doesn't even get his own birthday!) and ten years younger than William.  She's the only girl.  So she's been set apart in the family, not just by autism but by relative age and sex.  And to be honest, I think sometimes the boys have half liked it that we couldn't focus on them as much as many parents.  Teenagers, although they do still very much need parents, sometimes like having a little more independence than some of their peers.  But so much hasn't been fair to them.  I know there are compensations, and I've read and agreed with so many articles and blog posts about the benefits to siblings of having a sister or brother with special needs.  However, I sometimes very, very much wish I could give them all the attention and resources they deserve.

Janey and Freddy
This afternoon, I decided on the spot that for once, I would put Freddy's needs first.  There wasn't anything special about today, except that every afternoon Freddy has left being in high school and living at home is special.  I wanted to let him be the sibling that got the attention.  Well, that wasn't easy.

The first test---Freddy and I decided to watch last night's episode of "The Voice" on Hulu.  A friend of his from school is on the show right now (go, Nathan!) and we knew he'd advanced, and we wanted to see his performance.  Janey had other ideas.  She kept trying to turn off the TV, succeeding a few times.  She whined non-stop..."I want Kipper!  I want Barney!  I want Olivia!"  mentioning every show she could think of, in hopes we'd give in.  And so many times---we do.  It becomes just not worth it to listen to her when we are trying to watch something.  But she actually likes The Voice, when she will watch it.  She likes dancing to the songs, she likes the singing.  And even if she didn't, I was determined to watch with Freddy.  We did see his friend's part, but after that, we both gradually drifted away.  It wasn't worth the fight to see the rest.

Next, I wanted to help Freddy pick classes to sit in on during a visit at a college he's been accepted at next month.  I love things like that.  I LIVE for things like that.  He got to list 3 choices from a long list of classes for both morning and afternoon.  I would have loved to sit there for hours, looking up the classes, discussing the options and just enjoying the whole process.  But again, Janey had other ideas.  After just a few minutes, she decided she wanted to go to the ice cream store.  I said no.  She repeated the request, with growing impatience, over and over and over.  I wasn't giving in.  Finally, she hit me in the face and bent my fingers back.  I felt close to tears at that point.  Couldn't she ever, EVER just for a little, short while, understand no and accept no?  And the answer is..no.  No matter how often I stand my ground and don't give in, it seems to make no difference.  Once she has an idea, a want, that is all that matters.  I did get through the choice process with Freddy, but in a hurried and not enjoyable way.

Tony came home after that, and took Janey for a ride for a while.  You might think---why didn't I just save everything with Freddy for that time?  If you are asking that, you probably haven't had teenagers.  You spend time with them when they are up for it, or not at all.  That's one of the reasons, but the other is that I just felt tired of always, always having to say "Wait until Daddy can watch Janey.  Wait until Janey is asleep"  Sometimes, I want Janey to be the one to wait.

Later, Freddy wanted to watch "Star Trek Voyager".  Tony was home, and usually, Janey will tolerate that show.  For part of the time, she did, but then she decided I needed to snuggle with her.  This is often how she gets to sleep, and almost always, I'll just lie down with her.  I almost did this time too, instinctively, but stopped myself and told her "I'll snuggle when the show is over"  Of course, she wasn't happy.   She just kept repeating,over and over and over "Want to snuggle?  Want to snuggle on Janey's bed?  Want to lie down?" I finally gave in when the show was in its resolving last few minutes.

So---what did I learn here?  I don't know.  I think I learned I often, very very often, give in to Janey, because she doesn't give up until you do, and because the consequences of not giving in are pretty grim at times.  I don't like being  hit, or having my fingers bent, or having someone scream in my ear, or being bit.  But when I don't give in, it never seems to work as it would with a typical kid.  Janey doesn't seem to get my reasons or accept them.  It seems, like so many things, to really make no difference what I do.  Janey does what Janey does.

My boys both are wonderful kids, and they both have told me, emphatically, that they don't feel I've shortchanged them.  But from a young age, they haven't known any other life.  I am resisting the urge to go silver lining finding here.  Autism takes a toll on siblings.  And childhood is short.  My boys are adults, or close to it.  I've tried to do my best, but they have often been shortchanged, and I won't sugarcoat that.

Saturday, March 21, 2015

Autism and the Misconception of the "Magic" Mental Disorder A Guest Post!

This is a guest post written by my older son William, a sophomore history major at Brandeis.  He's an amazing writer and researcher, and I am so proud of him.

As a millennial and the older brother of my sister Janey, I have surfed the internet countless times, and I often find myself drifting to articles about autism and other mental illnesses (if one classifies autism as a mental illness, a debate which I will not get into right now!), partly out of my own curiosity, and partly as a way to understand the difficulties that Janey faces. One thing that always strikes me is the amount of lists, sometimes poorly compiled, of famous individuals who people speculate had autism or other mental disorders. People say that Albert Einstein, Thomas Jefferson, Alan Turing, Vladimir Putin, William T. Sherman, and even Abraham Lincoln could have had or have autism. I am not sure if the people compiling these lists are psychiatrists, but they do have a goal in mind.

I think that it is out of a genuine compassionate desire that people say that truly remarkable individuals throughout history have had difficulties such as autism. Countless movies such as The Aviator, The Rain Man, and A Beautiful Mind attempt to chronicle remarkable individuals’ lives and document their struggles with mental illness. Even avenues such as YouTube seem to eschew this benign praise and recognition of remarkable people with mental differences, as evidenced by videos such as “Jake, Math Prodigy Proud of his Autism”. And while drawing a correlation between something like autism and outstanding achievement or skill tries to empower the autistic community and other communities scarred by prejudice against people with disabilities, the extent of these correlations in modern media obscure a critical struggle of people and families of people with disabilities: the agonizing pain of the disability itself.

Sure, I concede that perhaps Albert Einstein had autism, or that Howard Hughes had OCD, and these two disorders probably shaped the greatness they became know for. Yes, sometimes individuals with autism achieve great fame and recognition and thus empower other autistic individuals and their families. I know all of these things to be very true. But, pain is the hallmark of any disability, and autism is no exception. Howard Hughes may have created spectacular movies, but he also suffered enormous pain everyday from his brain’s unrelenting desire for cleanliness and compulsion. Similarly, autistic prodigies such as Daniel Tammet can learn the Icelandic language in a week, but suffer tremendous pain in what for “neurotypical people” are everyday social interactions.


I know I may come off as stiff, formal, and academic right now, and in many ways I am. But what I have said resonates deeply with me and how I view my sister Janey. When my mother tells other people that Janey has autism, I want people to realize that that means Janey lives with constant, unrelenting pain everyday. Things that most people take for granted such as speech are tremendously difficult for Janey, and thus she tries to cope through screaming agony or what a parent who has not experienced autism first-hand might call “misbehavior” or even more disparaging, “bad parenting” (PLEASE never say that last one to my mom!). Janey cannot express even a simple desire for something like food easily. Partly out of our human nature and our frustration for Janey, the entire Amara family is profoundly affected by the chronic disability that Janey has called autism. Yes, she shows a passion for music, but that doesn’t mean she’s playing Carnegie Hall on the weekends. If you take anything away from this entry, it’s this: when you learn my little sister Janey has autism, don’t let the first thought in your head be the misconception that Janey is a savant with almost magical abilities. Let the first thought be that Janey, like millions of other autistic people and other people with disabilities, suffers tremendous, chronic pain everyday from her disability and this pain has profoundly shaped her life and the lives of her loved ones.

Friday, March 20, 2015

Word Retrieval and Blaming The Cat

Yesterday, Janey tripped over a cord when I was vacuuming.  She screamed, and I turned off the vacuum and ran over to her.  She was fine---she didn't fall down, just lost her balance a little.  I started saying the things mothers say when their child is upset "What happened, sweetie?  Are you okay?" Of course I knew what happened, but there's kind of a patter that kicks in at times like that.  What surprised me was what Janey said.  In between tears, she said "Did Merg scare you?"

Merg is one of our cats.  He was nowhere near us at that time, and certainly didn't scare Janey.  I said "Merg scared you?" in surprise, and Janey said "Did Merg scratch you?"  With Janey's usual reversals, she meant of course that Merg scared and scratched her.

This incident made me think about how Janey's issues with word retrieval might be the cause of a lot of her anger and lashing out.  It so often seems like it's very, very hard for her to find the right words and sentences to use.  She knows what she wants to say, but she can't think how to say it.  So instead, she says something that DOES come to mind.  There was a time a few months ago when Merg did scare her, after she pet him a bit too much, and we asked her at that time "Did Merg scratch you?"  He hadn't, but the phrase stuck in her mind.  I'm sure we might have said then "Did Merg scare you?"  When Janey was scared by the tripping, somehow that script came to mind.

So often, Janey asks for things, and then when she gets them, she acts like you have done something very wrong in giving them to her.  I am thinking that many of these times, what she asks for is not what she wants at all.  She'll say "I want bacon!" or "I want Kipper!" when she wants SOME kind of food or SOME show, but not those specific ones.  And we, understandably, try to give her what she asks for, and I can imagine how frustrating that must be for her (and for us).

We have tried using visual aids to help Janey with this, like pictures of various foods or shows.  However, it often seems like the word retrieval is more than just not being able to say what she wants.  It extends to being able to point out what she wants.  She often brings us videos, videos she knows by pictures on them, and then when we put them on, there is again the fury.  Her mind seems to trip her up, like the cord did.  It isn't able to form either a word or a picture for what she really wants, although she knows what she wants in other ways.

It's hard to think of a solution to this problem.  It seems like there are circuits in her brain which just don't allow her to find words or pictures in an straightforward way.  I feel for her so much with this.  I can't imagine what it would be like to want something, to know it's possible to get, but to not be able to find the words to ask for her, or to be able to pick out the right picture, or write the word down, or really communicate in any way what it is that is wanted.

This problem also makes it very easy to unconsciously influence what Janey says.  Sometimes when we are desperately trying to figure out what is wrong, we give suggestions, and Janey grabs at them like a life ring.  For example, if she wakes up screaming, we might say "Do you want bacon?" and she'll echo that---"DO YOU WANT BACON?" So we think we've hit on it, only to make her bacon and see her get even more upset.  Even in the Merg-cat case, something we said months ago popped back up and lead to her accusing Merg of evil-doing he had nothing to do with.

At times, I feel like this problem with being able to communicate is a huge part of what makes Janey challenging.  Other children with autism seem to be able to use communication devices or programs like Proloquo, but I think that is when the problem is more with being able to use verbal speech.  Janey is easily able to form verbal speech---I think the problem is more being able to access in her brain either a word or a picture for what she wants.  And I wish very much I could help her more with this, help her communicate her wants and needs so we could better meet them.

Tuesday, March 17, 2015

Three Surprises in Ten Minutes

Janey has been tough lately.  She's been wearing us out, trying out patience, discouraging us a good deal.  Last night was no exception.  She was cranky, volatile, angry, and we were tired out of our minds.  And then, within a very short period of time, she surprised us with her unique and her quirky language three times, and left us laughing instead of crying.

The first incident stemmed from her love/hate relationship with "Little Bear".  Little Bear is one of the mildest TV shows you could ever watch, a sweet story of the adventures of a human-like bear, his family and various other animal friends.  We really don't get why Janey is so worked up by it.  She asks to watch it constantly.  When we put it on, she will watch about 5 minutes of it and then blow up, always.  She freaks out spectacularly and gently or not turns off the TV.  Last night followed that pattern.  She asked for it, we said as we always do "But that show makes you very upset!  Do you PROMISE not to hit the TV or scream if we put it on?"  Yes, we are suckers.  We know her promises are not sincere, but we give her another chance, over and over.  We put it on, and the same thing happened that always happens.  She screamed after a few minutes and slammed her hand into the TV to shut it off.  Tony told her to go to bed (it was close to bedtime) and said "I am not proud of you!"

That's when she surprised us.  She said back, in a voice familiar to parents of preteens everywhere "I am not proud of you either!"  We looked at each other astonished, and couldn't help starting to laugh.  It was so unexpected, but at the same time, so typical of a child her age.  I'd never heard her use the world "either" before, and she rarely responds to anything in that kind of sentence.  We were frankly delighted.

However, she was still supposed to stay in her bed.  We lay down with her, trying to get her to sleep. She faked being ready to sleep for a few minutes, and then surprised us the second time.  Using a sing-songy silly voice, she said "I have to go potty.  I want to make a stinky.  I need to make a poopy.  I want to have a....(imagine her going on and on for about 10 different words that are euphemisms for needing to use the bathroom)"  We had no idea she even knew some of those terms.  And we were fairly sure she didn't actually have to use the bathroom in that way, as she already had just a bit earlier, but she knows the one thing that will always allow her to get out of bed.  So I took her in, and of course, it was a ruse, but still...we again were shaking our heads and chuckling.

When she was back in bed, surprise number three came along.  She said, in a slow and careful voice "acetaminophen".  We had given her generic Tylenol over the weekend when she was banging her head and it appeared she had a headache, and she had learned the name somehow from our talking to each other.  We asked her if she wanted acetaminophen, and she said yes.  We were, again, shocked.  It's not an easy word, and not one she's heard a lot.

All three of these happenings illustrate what is so fascinating and at the same time frustrating about Janey.  She doesn't learn in traditional ways.  You can plug away at trying to teach her the most basic things for literally years, and she shows no sign of having learned them.  Or she learns them and then seems to forget them, like with writing her name.  But inside her head, there is so much going on, and when the time is just right, it comes out, giving us a tantalizing glimpse of a Janey we wish we could see more often.

Saturday, March 14, 2015

Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.