I'm way overdue for an update but life has been a rockin and a rollin a little too much these past couple of weeks and I just haven't been able to sit down and keep up the blog. I promise I will do so as soon as possible! Stay tuned!
During the summer of 2005, I underwent what I believe I will look back on as some of my most challenging times as a mother. I was pregnant with my second child, filled with a myriad of emotions regarding baby’s arrival – was this a little boy or a girl? What would he/she look like? How would the birthing go? I hoped that he or she would be healthy, that our transition into a new existence together would be smooth. I was also experiencing a plummeting sensation in my relationship with my older son, Angus. I was certain that he would soon be diagnosed with Autism. I was increasingly worried by his behaviour, and my lack of understanding of him, aching for a connection I could comprehend. Searching for understanding led me to a website created by a mother of two children on the Autism spectrum. Her son Sébastien was the eldest, diagnosed with PDD-NOS (Pervasive Developmental Disorder, Non-specific, of the Autistic variety), and her daughter, Ophélie also had a PDD-NOS diagnosis, related to Asperger’s Syndrome, often associated with a “higher functioning” end of the spectrum.
Such a weight was lifted in reading through this site. I had to find its creator, this mother expressing so much love at a time when I felt my motherhood scales tipping heavily into frustration. I almost instantly felt relief, less alone, inspired that I could reconnect with my child. I was also relieved that should my second child also exhibit symptoms of Autism, it wouldn’t be the end of the world.
Locate that mother I did, via the email address on her site. She was compassionate, funny, full of life, creativity and so genuine in her response. Since that time we have exchanged countless emails and messages of support, release and understanding. Her name is Annie Trepanier, a resident of Gatineau, Quebec and one heck of a force to be reckoned with.
Diagnosis was not an easy process for Annie, her husband, Vincent Allain, and their children. A great deal of experience caring for children in her youth worked in her benefit – and resulted in early detection of PDD in her children. Her recognition of the absence of some distinct milestones of early childhood, as well as the presence of some behaviour highly symptomatic of Autism, contributed to the relentless pursuit of help and support for Sébastien and Ophélie. Her children were blessed with what every child needs, particularly those with special needs – a ferociously determined advocate and researcher.
Her tireless absorption of the facts and figures of the Autism spectrum provided an unexpected twist…her own informal diagnosis. As a child Annie had also undergone therapy related to social behaviour. At the time, the professionals responsible for her assessment attributed her personal challenges at the time to her reaction to her parents’ divorce. In Annie’s research regarding her son’s symptoms and diagnosis, she had recognized him, attained a clearer concept of how to approach his needs. When researching her daughter’s diagnosis, she was faced with a mirror. While Annie does not have a formal PDD/Asperger’s diagnosis, the recognition of an overwhelming number of familiar thought patterns, behaviour and social challenges made it clear for her. Her perception of others, and her difficulty in relating to many of her peers were suddenly not simply quirky aspects of her personality, but definable, occurring for a reason. Her interpretation of the world, her world, and her interactions with both could be explained.
In August of 2008, as the commencement of the school year approached, Annie and Vincent noticed a change in their son, Sébastien’s behaviour. He began what seemed like a period of regression, quickly associated with anticipating the return to school. While his diagnosis is related to Autism, his level of functioning was considerably higher than the peers with whom he was sharing a high school classroom, teacher and educators. While school was going relatively well, the form of education Sébastien was receiving at the high school level was not well-suited to his needs. In a radical decision, a mere few days before the start of school, Annie and Vincent made a huge move – an attempt at homeschooling would be made.
The experiment was a success. While extremely demanding with regards to time and resources, Annie achieved a rhythm and routine that worked. Fieldtrips and a great focus on subjects of high interest to Sébastien allowed him to progress at a rate personalized for him. With his second year of homeschooling underway, Sébastien is continuing to enjoy learning from home.
While Ophélie experienced some social challenges, her need and interest for interaction with others was more prevalent than that of Sébastien. The school environment worked in her favour as a rule. However, her sense of judgment in some more serious social situations became a concern, leading Annie and Vincent, with Ophélie’s involvement in the decision, to begin a homeschooling routine for her as well. Ophélie has doubled the student population, joining her brother in their “homeschoolhouse.” While Ophélie and Sébastien still project some of the challenging behaviour of other teens their age, at twelve and fourteen years of age, they are flourishing in a new school environment, designed, and constantly adapted, for them.
Four years have passed since my first communication with Annie. In that first year my second son, Leander, arrived (healthy and sans PDD) at the very outset of my eldest son, Angus’s diagnosis with Autism and his first intensive ABA (Applied Behavioural Analysis) therapy. While I was extremely fortunate to have a network of help and love from family, friends and my community, support from someone who had a greater understanding for what I was experiencing was an immeasurable relief. Connection with other families living with Autism increases on a regular basis, with the development of many online support groups.
While the original website dedicated to her children has been closed, Annie has developed a website for the “Baboutopia Homeschool”, featuring photos, projects, blogs, videos, a fundraising section to help pay for resources, and other helpful information. Visit the site at: http://web.me.com/mommybab
Learn more about Annie, Vincent, Sébastien and Ophélie, the origin of Baboutopia, and their adventures as a family, by listening to the full interview with Annie Trepanier, tonight, on DH Radio on CJMQ 88.9 fm (or listen live at www.cjmq.fm) from 9:00 – 11:00, with your columnist and host, Sheila Q.!
Seb was up early today so he got a head start... read a few pages of Tendres Dragons and translated 3 pages of Faeries' Gift.
This week was a bit disorganised because we had many appointments.
Rainy, dreary day... have to make do.
Ophélie finished reading her book about the evolution of life and has started writing her book report.
Sébastien read a bit about Jesus, did some math (prime numbers) and some English. I made him read in a children’s book and write in his words what each page is about.
Today was a light day because last night’s Benadryl made mama into a zombie!
We did a brief into into Buddhism... we looked at and manipulated ritual objects such as a prayer wheel, a vajra, a singing bowl and we hung prayer flags and a banner with auspicious symbols. The kids thumbed through some books about Buddhism while listening to Tibetan music and chants.
On today’s menu, logic and French for Ophélie and distributiveness in math and some reading (Tendres Dragons) for Sébastou. Two 30 minute documentaries on early mammal life for a mellow afternoon!
I made some photocopies from less dreary books about religion. I will read therest of the book I started with and give the kids an account of the best bits.
Haven’t accomplished much these past couple of days because Mrs Mommy Teacher is tired! Thrilled are the students of an insomniac teacher!
We did a bit of math (exponants for Seb and 6th grade revision for Ophie), a short composition about Samuel de Champlain for Seb and lots of reading for both!
I’m starting to regret having chosen the above pictured book for an intro to religion as a concept. It’s too dry and academic and the kids aren’t finding it very intresting. I’m probably going to have to read it, digest it and regurgitate back only the good bits to them!
Today is Saturday! No school for the kidlets... but mum will still work.
I am preparing our course on Buddhism. I’d like to get items related to the Buddhist practice so the kids can get a more hands on feel for the lessons they will learn... so today will be a day of research for mum!
I'd make a deal with God,
And I'd get him to swap our places,
Be running up that road,
Be running up that hill,
Be running up that building.
Say, If I only could, oh...
Picture two people at the bottom of a hill...
Can they both make it up the hill?
You don't know. I haven't given you enough information.
OK... I will tell you that one person is standing up and the other person is in a wheelchair.
Can they both make it up the hill?
At this juncture, you may venture a guess based on your prejudice. You may make assumptions. You may be the type to think, "the bloke in the wheelchair can't make it up the hill alone!", you may the type to think, "disabled people can do anything normal can do; they just need more work or a different approach!" or you may be the type to think, "if the able bodied person helps the person in the wheelchair, then they can both get up the hill together!" You may be type to think any number of other things... you may want more information about the two people.
The man standing up may be a pregnant woman, a ninety year old with arthritis, an athlete, a child... The man in the wheelchair may be a pregnant woman, a ninety year old with arthritis, an athlete, a child... with Parkinson's...
Without more information about the two people at the bottom of the hill, you cannot know if they can both make it up the hill.
And HOW you get your information matters about as much as the information itself. The man in the wheelchair may be muscular and the man standing may be frail... but the muscular man may have taken a nasty fall yesterday and his shoulder hurts like hell and he can barely push his chair on a flat surface let alone up a hill... the scrawny bloke may have just taken a whole bottle of amphetamines and be able to run up the hill in a second flat... only to die of massive coronary failure at the top.
So now, for the sake of this argument, let's say we've solved the issue of whether or not both people can get up the hill. Let's pretend they both can. Let's pretend that they both got to the top because the wheelchair bound person was either pushed, dragged or crawled on his stomach. They're both at the top of the hill. Wheelchair dude should be happy, no? Yay! You're up the hill, mate! Look happy!
Ever thought that maybe HOW you get there is even more important than why, whether or not you can get there or getting there at all? It's hard to feel great about being up a hill if you had nothing to do with getting there. If you were pushed, maybe it's not that bad... but if you had to crawl on your stomach? What if you were dragged unceremoniously by an arm or by your hair? How glad would you be to be up the hill? How likely would you to take it well if someone told you: "You're up the hill! Just be happy! STOP QUESTIONING IT!".
Now picture two people entering a social situation. Picture them at a big party with 500 guests. Picture two people having an argument. Picture two women meeting and falling in love with two men. Picture two people defending their children's interest to a school official...
Can they both make it up the hill?
You don't know, I haven't given you enough information.
So I will tell you that one is neuro-typical (normal) and the other is Autistic.
Can they both make it up the hill?
Do you still want to make assumptions?
Fool On The Hill
(The Beatles)
Day after day, alone on the hill,
The man with the foolish grin is keeping perfectly still.
But nobody wants to know him,
They can see that he's just a fool.
And he never gives an answer .....
But the fool on the hill,
Sees the sun going down.
And the eyes in his head,
See the world spinning around.
Well on his way, his head in a cloud,
The man of a thousand voices, talking perfectly loud.
But nobody ever hears him,
Or the sound he appears to make.
And he never seems to notice .....
But the fool on the hill,
Sees the sun going down.
And the eyes in his head,
See the world spinning around.
And nobody seems to like him,
They can tell what he wants to do.
And he never shows his feelings,
But the fool on the hill,
Sees the sun going down.
And the eyes in his head,
See the world spinning around.
You're very important. Of course you are. Your car cost a lot of money. The speed limit was set for those of us who drive econo-comical cars. Red lights are so we know to slow down to let you speed through the intersection. Your car doesn't have turn signals; turn signals were installed in our cars so you know where we're going thus enabling you to weave through traffic more efficiently at rush hour. The service ramp is to insure you don't have to waste your time in traffic with us.
You're very important. Your job is big and so is your paycheck. You have an office and a leather chair. Your favourite sports are squash and over-time.
You're very important. All your clothes are designer. Your shoes are of the finest leather there is and cost more than my entire wardrobe. You wear expensive designer sunglasses. They protect your eyes from all those posh UV rays that inexpensive sunglasses don't block. Like... UV RayBan, UV God Rays and UV Foofoo!
You're very important. Your house is enormous. Your decor is perfect, the decorator told you so. It's the cleanest house in the neighbourhood, you have a cleaning lady in twice a week. Your house is never messy, you're hardly ever there. You have a super high tech kitchen. My oh my the things you could whip up in there if you knew how to cook!
I'm a an absent minded person. I think too much. My mind has no time for inane info like: "Where did I leave my keys?" or, "Where did I leave the cordless phone?" And yet those are very important questions that, once answered, lead you to very important information, like the location of your keys or your cordless phone.
Every time I go to the bathroom, I take the cordless phone with me. Why? Because people wait until I pull my pants down and sit on the toilet to call me. It isn't my fault. I need more considerate friends, family and telemarketers. So I take the phone with me, I put it down by my feet or on the counter, I do what I need to do and leave the bathroom. The phone? In the bathroom, on the floor or on the counter, right where I left it. This, of course, leads to mad dashes around the house and much cursing about where did I leave the "deleted expletive" phone!
I need to not bring the phone with me. I need to start ignoring the ringing phone while I am on the toilet. Barring that, I need a clever idea...
...wait! I'm chock full of clever ideas!
Now when I go to the bathroom, I still take the phone with me. I put it down. I never forget it in the bathroom anymore. It all has to do with WHERE I out it down...
What?
Oooooooh! You wanna know where I put it down?
In my pants! Naturally. No, no! Not in my panties! I put it in the crumpled up pant leg at my feet. Trust me, it's impossible to forget it there. I did once. I was very quickly reminded of its presence as I pulled my pants up. But that's not the best phone in the pants story.
Picture me. I'm sitting on the toilet. My cordless phone is in my pants. I am obeying the call of nature. Bit of a tummy ache... I smell like chemical warfare. I'm trying to focus on happy thoughts, nice smelling thoughts. Then all of a sudden, my pants ring.
Now, picture me... sitting on the toilet... frantically grabbing at my pants to fish the phone out from under my panties down where the phone is hiding... in one of my pant legs... under folds of fabric. I'm cursing... at my pants. Find the phone... feel like chucking it across the room... look at the caller ID... it's an important call. Fuck. I answer. I start having an important conversation... sitting on the toilet... bathing in toxic fumes... I can't get up because... you know why! I can't flush because the person on the phone will recognize the sound... it's a sound we all know... a very normal, universal and real sound... a sound that says: I am Human and I just evacuated biological trash! If I try to wipe myself and leave the room I will have to struggle to do it one handed and I will end up making odd straining sounds and I might even drop the fucking phone... in the toilet! So I sit... and I have an important conversation... a long, important conversation. And the person who I am talking never knows where I am. The person on the other end of the line never knows how stupid I look during this phone call. The person on the phone never knows how much I curse them and the rotten timing.
Clever ideas... they can lead to ringing pants and toxic inhalations.
Maybe I need to start wearing a HAZMAT suit to the bathroom...
For the past two years, we have tried everything we could to help Ophelie make friends at school and find her place in the social order of her class/school. We talked to the teacher, the principal, the school board psychologist, etc, we involved the local Autism center who went and did two interventions/info sessions with the kids at school. We talked to Ophie, gave her tips, explained to her that she has interests different from kids her age and that friendship is a game of give and take.
Nothing's worked. Ophelie spends recess and lunch break alone.
My daughter wants other kids to accept her for who she is and to be interested in what she likes. That's not gonna happen. We've given it a go... and it hasn't happened. Two years.
Today we're taking Ophie to talk to our social worker (at Ophie's request). We're going to talk about the possibility of homeschooling sooner than next September. Ophelie wants to do a two week trial and then go back to school and decide which she likes best. Problem is, I think she may end up picking school because she clings to the hope that if she stays in school, the kids are going to come around...I think she's waited long enough and tried hard enough and now she's just clinging to a pointless hope and it's taking its toll on her emotionally.
What do I do? Do I make the decision for her and do what's best for her or do I let her stay in a situation that hurts her because she has hope?
How long do I let my daughter sit on a log in the pouring rain at the edge of the forest, waiting for a unicorn to come and eat out of her hand before I decide that it isn't worth the heartache and pneumonia?
