Daddy's thank you to Janey during trying times

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

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

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

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

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

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

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

You are the best Janey!

Janey's post

What would Janey want to say in a blog post, if she could write one?  That has been on my mind lately.  I am a voice for Janey here, because she can't write, and she is what I've found is called low-verbal---she talks, but not much and not always with meaning.  I take being Janey's voice very seriously.  I would love her to be able to say what she thinks, to be able to share insights into her own life with her own voice with all of us.  But I can't make that happen just by wanting it.

The other day, using the idea of assuming competence, which is an idea I like very much but don't always find to be useful, I told Janey about this blog.  It's certainly been no secret, but I realized I hadn't sat down and explained it to her.  To be totally truthful, I don't think she understood what I was saying at all, but I don't know that for sure.  I told her I write on the computer about her, to tell people about what a cool kid she is and to help people understand autism.  When I say the word "autism" to Janey, I have realized I make it sound like I'm saying "Christmas morning" or "huge treat".  I want it to be a word she associates with all good things.  I then asked her if there was anything she wanted to tell people who read about her.  She didn't answer, as is usually the case.  I then did a starter phrase "I want to tell you that..." and she said "I love you!"  It's a very nice answer, but it's also echolalia.  I say all the time to her "I want to tell you that I love you!"  

After a lot more trying to get Janey to say something else, she did---she said "Are we done yet?"  That was actually a phrase that I haven't heard her use a lot, and I listened and stopped talking.

So---I have to guess.  What would Janey want to say?  I don't know.  Janey isn't self-reflective.  She hasn't ever said anything that indicates she understands past or future, or that she gets what autism is, or that she realizes she is not quite the same as a lot of other kids her age.  So I don't think that she'd make profound statements about why she does things she does.  

My best guess is based on what Janey asks for, what she seems to be driven by in life.  I think she'd want to talk about music.  She'd tell you what songs she likes, and what singers.  She'd want to talk about food, especially favorites like Chinese food or tuna or kale.  She'd tell you how she likes to cuddle on her bed, with her favorite special pillow.  She'd want you to know how much she loves car rides with Daddy.  She'd probably want to discuss her favorite TV shows, especially Angelina Ballerina.  I don't think she'd say much about school.  School and home are separate worlds for her, and she's never said one word to me about school.  She might say she's sad or angry, if she is.  She might tell you about Rebecca, my friend Maryellen's cat that for whatever reason seems to be often on her mind.  

I might be selling Janey short.  I've been amazed by videos I've seen of kids that learned to type and had many intense things to say.  But Janey doesn't seem to have a huge urge to communicate, and any attempts to get her to communicate in alternative ways are very quickly shut down by her.  She likes to use her voice, and the words she is comfortable with.  She understands probably 100 times more words than she says, and when she is using delayed echolalia, she shows she can physically talk easily with long words.  But she chooses not to, and I have to respect that.  It's like if someone said they needed to work hard with me to teach me to run marathons, when I've never shown the slightest interest in or inclination toward running.  I'd resist them at every turn.  I might be able to learn to run a bit better, but I'd hate learning and I wouldn't use what I learned.  Maybe it's not that extreme with Janey, but she does seem extremely resistant to my tries to widen her communication.

I'm putting some pictures of Janey on here, because in many ways, that is how she communicates best---by facial expression, by what she does.  I wish you all could meet her in person.  Until then, I'll keep letting you know her by writing about my very cool kid.

Speaking for Janey

There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia.  I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey.  But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material.  Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.

I very much feel that whenever possible, it's important to listen to people with autism.  I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook.  Thank you, Sophie!  However, I kept feeling when reading the criticisms---what about Janey?  What about kids like Janey, who cannot speak for themselves?

Of course, in some ways, Janey can speak for herself.  She can tell me her basic wants, if they are in words she says---"Snuggle on the bed!  Want cheese!  Want Chinese food!  Do you want to take a car ride?"  That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it.  She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much.  Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.

And that is where I come in, and my husband Tony, and my sons.  We speak for Janey.  We might not always get it right, but we try.  We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.

Tony wrote about life with Janey as a guest post here, and I loved it.  William and Freddy, my sons, have written guest posts too.  When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog"  And of course, she can't.  Or can she?  I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing.  I'm sure I haven't been perfect.  I'm sure there are things Janey would have wanted everyone to know that I haven't written.  But I've done the best I can.

If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people.  Should I never speak for Janey?  Should I wait until the day that might never come, when she can speak for herself?  I don't think so.  I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey.  She deserves that.  When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice.  She deserves that.

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!

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.

My First Guest Post! Guest Author---Freddy Amara, Janey's brother

Hello Rarer In Girls readers,

My name is Freddy, Suzanne's middle child.  I am 17 years old and currently a senior in high school.  My mother had requested that I write a guest blog entry about how Janey has affected my childhood.  I responded that I would be happy to; this blog has had a profound impact on my mother's life, as there is a wonderful community of more than just readers.  You all have let my mother---and my family---know that we are not alone.  Your support is incredible, and I personally thank you for reading my mother's entries and giving her support.

This is how Janey has changed my life.

It hasn't been easy with a little sister with autism.  I wish she wasn't autistic, obviously, as I feel I

cannot have conversations with her that I could have had with her had she been normal. However, I love her the way she is. I have a special connection with her that nobody else has, much the same as a normal brother and sister would have.   My personality has certainly been altered because of Janey.  I feel like I am more tolerant and patient than many other people my age.

One of the hardest parts of being a sibling of somebody mentally disabled is the misunderstanding among everyone else.   The usage of the word "retarded" has died down over the past few years, however, each time somebody uses it in an offensive context, I feel a sharp pain.  They don't know what it's like. The nights of screaming, the stares in public, the fear for the future.  I try to explain to people when they use the word how deeply it can hurt.

My parents have been great in my opinion. Ever since her diagnosis, they have made it clear that for my childhood, Janey is our shared responsibility; more theirs than mine and my brother's, however, there will come a time that when my parents will not be able to care for her anymore, and she will be our responsibility.  I accept this, as does my brother.  I do help out with Janey often, but my parents have let me have an otherwise completely normal childhood, and they care for me just as much as they would have had Janey not been autistic.  In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her.   This is good for me, I have learned independence at a younger age than others, and my parents have learned to trust me with my schoolwork and don't bother me about when I do my studies.

It should be said that I'm writing this on my own, my mother doesn't even know I already wrote this.  She'll proofread it before posting, I'm sure.

Autism is a scary thing.  I want to have children when I am older and have a family, however, it is widely unknown what causes autism, and it is possible that genetics play a role.  I have questioned whether I want to have children despite the risk of autism.  I know I'm quite young and I shouldn't worry about it yet at this age, but I can't help it.  I'm glad my parents had me, and to all of those parents out there who had an autistic child as your first, it must be a tough decision whether you should have more children.  It's not my place to say, I'm just happy that I exist, and I think I'll take the risk someday of being a father.

It is nice all the support people give towards finding the cause of autism, however, as my mother has likely spoken about before on this blog is that the public doesn't seem to care as much about helping families that have already had children with autism.  Many things could cause autism, or any other mental illness for that matter, and so I agree with my mother that it would be nice if there was more support or awareness for those who have a loved one already diagnosed.  I feel like I should follow in my mother's footsteps in raising awareness somehow.  How, I don't know.  I believe just letting people know how common autism is is the first step.  Not only that, but the effect it has on our lives.  You all reading this already do know and care, and so I thank you.  My only request is that you tell somebody about autism who might not know its effects on families, and maybe even share this blog with them.