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...
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| Janey around age 5 |
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...
Unbearable
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..
Aldomet
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...
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| 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.
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