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Friday, September 28, 2018

For new readers of the blog, or seasoned readers that want an overview!

Hello, and welcome to my blog!  I've noticed a lot of blogs provide an introductory post.  After 10 years, I thought it might be time for me to do the same!

This blog is mostly about our daughter Janey.  She is now 14, and she was diagnosed with autism when she was 3 years and 3 months old.  Our family also consists of my husband Tony (age 56), myself, Suzanne (52), our son William (24), who now lives in Chicago after finishing grad school and our son Freddy (21),  who is a senior in college, and our two cats, Tommy and Merg.

Here's a little about Janey today, and our road to today.

Janey, at 14, is an amazing person.  She's got a personality that draws people to her, a sense of humor, a smile that melts hearts, a talent for and love of music that is amazing.  She is also what would generally be termed low-functioning.  She talks in phrases or single words, and in scripted language from videos.  She doesn't read, write, draw, do math.  Her academic skills are at a toddler level.  She is semi-toileted trained---enough to wear underwear to school with few accidents but not enough to wake up dry most of the time.

Janey was born after a very difficult pregnancy and labor.  She was colicky, but not quite as much as her brother Freddy had been, she would never nurse (I pumped milk for a year) and she didn't walk until she was 2.  However, the one thing that we didn't think was an issue during her first 3 years was autism.  She talked a lot, she was outgoing and engaging and funny.  I remember so well at her 18 month appointment with her pediatrician how he said "Well, one thing we don't have to worry about is autism!" as she tried to engage him all during the time he was examining her brother.  She had early intervention for her motor delays, but never speech therapy from EI.  They discharged her at 3 without referring her for further special ed. services, and we agreed.  The last time her physical therapist saw her, she remarked on how interactive and funny Janey was.

I cry sometimes when I recall those early years.  I have videos of Janey's speech I can't watch to this day.  That is because around the time she turned 3, she stopped talking almost entirely.  She stopped interacting with us.  She stopped smiling.  By the time she was fast-tracked for an evaluation and was diagnosed with autism, it was not a surprise. We already knew.

This blog is not one of those that writes about miracle cures, or amazing breakthroughs.  I wish I could, but Janey in many ways has not made progress from the time of her heartbreaking decline.   Her talking has at no point regained the level it was at when she was 2.

However, I like to think this blog can be one that inspires hope.  There have been dark times with Janey, but today, she is happy, most of the times, and we delight in her, almost always.  The breakthrough we've had is more one of acceptance, but that's not a strong enough word.  It's one of learning to embrace what Janey is, rather than mourn for what she isn't.  I am not a Pollyanna.  There are still many parts of this autism parenting gig that are hard, and most likely will always be hard.  But life with a child like Janey can be a wonderful life.

How did we get to today?  There are many, many little things, but two very big things that I believe led us to our current way of thinking.  Two hospital stays, both during the year Janey was 10, one for psychiatric reasons, which included a stay in a psychiatric hospital, and then, a long hospital stay that involved a burst appendix and many, many complications from that event.  We realized several things from these stays.  One is how little help society is prepared to offer children like Janey with anything but strictly medical issues, with the notable and important exception of the public schools, and the other is how much we treasure Janey---how the very real chance that existed of her dying from her medical emergency made us realize that nothing on this earth was more important than her (and our sons) life, health and happiness.

My purpose in writing this blog is threefold.  First, I want to write about the experience of having a daughter with autism as honestly as possible.  When I was starting out, that is what I craved to read---accounts that told the truth, without an agenda or a bias.  I've tried very hard over the years to be as honest as I could, while respecting Janey's and other family member's feelings and privacy.

My second purpose in writing was to try to find a community.  I felt so alone at first.  It felt like no-one else in the world was living my life.  Gradually, more and more over the years, I met so many wonderful other families, mothers and fathers and children like Janey and siblings like my sons.  I started a Facebook page to further those connections, both for myself and hopefully for others to meet families travelling a path similar to their own.

My third purpose was totally selfish.  I need a place to write about Janey, because writing has always been my way of coping.  When times got tough, or when wonderful things happened, my first thought often was "I want to write about this!"  It has helped me so much over the years to have a place to vent, to cry, to rejoice, to share.  It's also helped me to remember what events were actually like, by being able to look back at what I wrote while going through them.

It would take anyone a long time to read this whole blog from start to finish!  I haven't even done it in full for a while.  So I'm going to put some links here to posts that I think most illustrate points along our way, if you want to get a condensed tour through the last 10 years.  Or jump in anywhere, and if you like, join the Facebook group!  Thanks so much for reading.

Posts to get your started

I put this post first, out of chronological order, because I think it might be the most important post I ever wrote---a heartfelt plea for everyone about how physical pain might be shown very differently in a child with autism than in typical children.  It was written after we almost lost Janey when her appendix burst...

Autism and Appendix Pain

This post isn't one of my better written ones, but it's about a day that's often stood out in my mind as the last day for many years I took Janey out and about alone.  Her behavior that day was scary, and it was the start of some tough times...

The bad McDonalds trip

Here's a post where my pediatrician at the time talked about various labels that might apply to Janey...

Janey around age 5
Talking about labels

An example of the early dark days, when I didn't think anyone read the blog and I was realizing how little help was out there...

Dark Day

When I started thinking about medication, causes and a depressing report I got..

Long Week

A preview of how hard it would be to get good medical diagnoses for Janey's physical illnesses...

Doctor's Appointment Rant

A day I remember as a turning point, when I realized we just couldn't go on as things were...


My reaction to a phrase we as autism parents often hear...

I don't know how you do it

My anger over the summer program the first year Janey went...

Summer Program

One of the many sleepless nights!

Sleepless Night

My fantasy idea for what would REALLY help

The autism center

A post from the thankfully fairly short-lived extreme mischief phase..

Dennis the Menace was a slacker

Details about the drug allergy I truly feel is a leading contender as to what caused Janey's autism..


A day I remember as the start of the 2nd very tough period of Janey's life...

CVS Hell

Going against the general stereotype...

How autism has made me a worse mother

Why I haven't written a book, kind of!

The books I can't write

Why we stopped using the only respite we've ever gotten...

A tough decision

Janey and chocolate...

Why I don't discount anyone's theories

The heartbreaking decision to take Janey out of the inclusion school...

When inclusion is no longer working

The first post in a series about Janey's psychiatric hospitalization..

A Whole New World

Freddy's writing on the rudest people we ever met..

Rude People 

Letting myself be bleak...

Don't read if you are new to autism

The first post about Janey's burst appendix and long hospital stay...

Part One about the Appendix...
Janey now, at age 14

A switch to a new doctor, which should have been years sooner..

The New Doctor

One year after the health crisis, and the start of our new attitude..

One Year out

The first best weekend ever---we've had more since then!

The Best weekend ever

What it's like at our end of the autistic spectrum

Janey's end of the spectrum

How life is now, and it's not a bad life!

Reflecting on progress at the Whole Foods

So there's my probably too long list of posts that stood out to me.  It was hard to choose, and a different day, I'd have chosen a different list, but this list might give you some ideas where to start.

Wherever you are on your journey with autism, I wish you the best.  Please know you aren't alone, ever.

Wednesday, September 19, 2018

How Janey would tell the bus story

The start of this school year was marked by bus issues.  The buses that Janey had assigned to her did not have aides on them, and several times, the morning bus simply drove by our house as Tony tried desperately to wave it down.  He wound up driving Janey to school those days.  The afternoon bus twice drove her home without an aide, breaking their own rule (the aide for Janey is not something we requested, but something the transportation department had said she needs) and twice relied on a school aide kindly riding with Janey so she could get home.  Knock on wood, these issues seem to be resolved, thanks to Janey's terrific principal advocating for her.  Janey is on new buses, ones with aides.

I've been struggling to explain to myself and in this blog why the whole bus issue upset me so much.  Every way I tried to write about it, I found myself reading what I wrote and thinking "Yeah, that doesn't sound like such a big deal"  Then, looking at some pictures I took today, I realized that it's a big deal to me because it was a big deal to Janey.  She loves the bus.  She loves routine.  She loves things happening the way they are supposed to happen.  And the fact that it seemed, on the surface anyway, that the bus department didn't consider it a priority to get her to school, bothered me a lot. 

Janey doesn't talk verbally that much, but she talks volumes with her behavior and her facial expressions.  Here's the story of the bus issues, translated by me.  Forgive me, Janey, if I have made mistakes!

"I am so excited to go on the school bus to school!  I love riding the bus"

"Daddy and I are waiting for the bus. It's coming!  Oh, it's not stopping.  Daddy is trying to get the bus to stop.  Why can't I go on the bus?"

"Daddy is driving me to school.  I love to ride in the car, but this isn't right.  I don't go to school in a car!  Daddy is saying goodbye and I am with my teacher, but it's all wrong.  It doesn't feel right.  I'm crying because it's not the way it's supposed to be"

Not the actual bus that didn't stop, but a photographic recreation!

It is the little things, the small inequalities, the minor, not big enough to make a big deal of issues that sometimes are the toughest.  So the transportation department originally assigned Janey to a bus that by their own rules, she couldn't take?  It's fixed now, so why does it still bother me?  Because it's a million small moments like this that add up to block Janey from being fully included.  It's not just the bus passing her by---it's all the times that the small adjustments that would allow her to ride life's bus with everyone else are not made.

Janey---"Now the bus is here!  I'm happy!  I'm going to school!"

It's the little things that make Janey part of the bigger world.  Sometimes, we have to fight for the little things.

Thursday, September 6, 2018

Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus
Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)