Monday, May 16, 2011

my presentation from the motherhood conference.

Last week I spoke at the International Motherhood Conference in Toronto on "Sharing the Good, The Bad, and The Ugly of Autism Through Social Media to Effectively Influence and Advocate". Here is my presentation:

On Tuesday December 8th, 2008 I became the mother of a child with Autism. I know the specific date because I blogged about it.

Nothing really changed that day, yet everything changed. I was still Katrina, Marketing Manager, mother of 2, wife to 1. My son Max was still a beautiful boy with a mad love for blueberries. But the moment the doctor diagnosed Max as having Autism, I became the mother of a disabled child, and he became one. Both of us were thrust into a different world. One we were ill equipped to deal with. Invisible limits were placed upon us. I mourned for the son I feared Max would never be, and for the normal mothering experience I would not have.

There was no guide book to tell us what to do next. None of my friends had children with special needs. Parenting books treated having a disabled child as an unfortunate and rare occurrence and you would be lucky to find a short chapter on it tucked away at the end, between late miscarriages and what to do if your child dies in childbirth.

Autism is a very isolating disorder. It affects your friendships, your relationships with your family, and your marriage. You feel that nobody understands what you are dealing with, nor would you want to burden them with the ugly details. Your family members stand by feeling helpless. Your spouse grieves for the son he will never have, for a future that is no longer possible. It is easy to cocoon and close off from the world around you as you attempt to make some sense of your life, and get through the day to day challenges.

Many mothers seek out support online as a way of staying connected - I certainly have. My website - ficklefeline.ca - is read all over the world - from as far away as Australia to as near as the woman around the corner who worries that her 2 year old child may be showing markers of Autism. You see, online, we are all the same, and we don't have to apologize for our imperfect mothering, or conflicted emotions of wanting to be a "good" mom, while being incredibly pissed off at the universe for what has been laid at our door.

In the US alone there are over 34 million moms online - more than 40% of the adult female internet audience. Add to that Mothers ages 25 to 35 with at least one child at home are 85% more likely to spend time on Facebook than the average online consumer. Think for a moment, the power of this group of mothers. We depend on each other for advice, recommendations and support in real life, and this is true online as well.

I have found my main form of support by reaching out to my community at large by telling my story, or rather, Max's story on my blog. While the internet is full of misinformation that will cause you to lose sleep, - especially about Autism - it was communicating online that got me the information I needed to help my son and to not feel so very alone.

I never intended to become an advocate for anything. And I didn't start my blog to write about Autism (if I had I certainly would have chosen a name other than "Fickle Feline").
In fact, in 2004, pre-children, when I started my website "ficklefeline.ca" i was mostly dabbling in this new world of "blogging". My first post was very deep – professing my love for Jon Stewart.

Follow up posts commented on my love of celebrating Christmas - a 16 part series, my overweight cat and reviews of my favourite television shows. Deep stuff. I didn't write about trying to get pregnant, or the frustration I felt during the 12 months it took to conceive my son. That was far too personal. I kept it light and fun.

On November 1st, 2005 I announced that I was pregnant on my blog. After all, I was the FIRST person to ever conceive a child and oh my goodness - look at that button nose on that 12 week ultrasound scan! I documented my pregnancy for one and all, and when Max was born I was happy to share photos and talk about his progress. I became what is known as a "mommy blogger" and I enjoyed participating in this community of women who were celebrating motherhood and documenting their children's development.

As my son's progress slowed, the frequency of my blog posts slowed as well. As we started to figure out that there was "something up" with Max, my blogging all but came to a halt. I was consumed with the need to help Max, and I felt like if I wrote about it online, that would make everything official and cement this as our reality. I wasn't ready for that. But, as we got closer to a diagnosis, I felt the need to reach out to my community. I needed a way to tell my family, friends and even people I only knew online what we were dealing with. I needed some hugs (virtual as they may be).

Just before we got the diagnosis, I started writing about Max and what our suspicions were. The response was overwhelmingly supportive. I was surprised at how much people cared, how much they were rooting for us. Most of all - that I wasn't actually alone in this unchartered journey. Friends who had never mentioned that their children had special needs came out of the woodwork. It was almost as if me voicing my concerns and fears about Max gave others what they needed to speak up too.

Having a child with Autism is not something I would ever ask for. In fact, I would not wish it on my worst enemy, though in truth I have thought to myself that things would be very different if our Prime Minister, Stephen Harper, had a child with Autism. I think there is a blog in there somewhere. On the flip side, having a child with Autism has helped me find my voice and become a part of my self-identity. It has turned me into something I never thought I'd be - a capital "A" Advocate.

Certainly all parents advocate for their children. When you have a child with Autism, it turns into a contact sport. I advocate for my son every day, multiple times a day. Whether it is dealings with his junior kindergarten teacher, Special Education Resource Teacher, Educational Assistant or Principal of the school he attends, something will inevitably "come up". And that is just the morning.

In the afternoon, I deal with private therapists, coordinating schedules, and never ending billing issues. Then there are the mountains of paperwork, administration for funding and politics. But there are also fun things like working towards getting Max an Autism Service Dog. And there are heartbreaking things like dealing with Children's Aid when at the age of 18 months, one of Max's daycare providers locked him in a closet because he would not settle down during the scheduled nap time. You name it I have dealt with it.

I have always been Max's main advocate. Given our society’s dominant ideology of “intensive mothering” it is perhaps unsurprising that this role typically falls to the mothers of children with autism. It is rare for the father to take on this job. Because I have always been the one to keep track of Max's appointments, juggle the schedule and be the point person on all things Max, this role has become established as belonging to me, and has therefore become self-sustaining. It is to the point that it would be all but impossible for my husband to take on this role, nor would I want him to. I feel a sense of ownership over this role. I have worked hard to develop a very necessary expertise in managing the ins and outs and challenges that crop up every single day. My husband could not do what I do, and if he was the one leading the charge, I would be judged for not being a "good" mother.

Predictably, my career has taken a back seat to that of my spouse. This was inevitable. It would be next to impossible for both of us to work full-time outside of the home, and still manage to care for Max. I have found it challenging to deal with the power imbalance created by earning less money than my spouse. To add insult to injury there is little recognition or value assigned to my role and the incredible skills I have acquired to navigate this new world.

The place I feel most validated regarding my work for Max and being an Autism Advocate is in the online space and through social media. Documenting our journey in such a public forum has helped me express my frustration, sadness, and grief I feel as the mother of a child with Autism. It has also been a place where I have celebrated every little win imaginable. Part of what keeps me going is reviewing videos of Max when he first started therapy. They help me see just how far he has come. It also helps other families who are just beginning their journey into raising a child with Autism to see there is hope. I lay it out for all to see - the good, the bad and the ugly.

I am very open with all of the people that work with Max about my advocacy and my writing. They know that I write about everything. I am careful to always be fair and accurate because I don't believe mud slinging gets us anywhere. But if you search for "IBI Waitlist Erinoak" in Google - my website comes up before the site of the regional IBI provider "Erinoak Kids". I blog, I tweet, and I use Facebook as ways to share Max's story and get my message out to one and all. While some may feel threatened by the fact that I share my experiences, no holds barred, it certainly keeps them honest and I believe, Max receives better care because of it.

Before I became a mother, a major part of my self-identity was tied up in my career as a Marketing Manager. Accolades, bonuses, promotions, better paying jobs, and climbing up the corporate ladder were very important to me. So where does all that go when you are no longer able to work full-time? Clearly nothing is as important as my son's care, and affording him every opportunity to have a chance to navigate successfully in this confusing world. But how do I marry my need to still have a foot in the land of paid work and being something other than just "Max's mom" while still continuing to be a "good" mom?

Surely the skills I have developed as a result of this journey would be of value somewhere? The literature on the experiences of Mothers of children with Autism, what there is of it, reports that mothers of disabled children have employment levels substantially below other mothers. This isn't surprising but it is disheartening. I have learned to navigate the most difficult relationships, juggle a schedule that would send parents of regular children into orbit, all while staying relatively sane and managing a household. But it is challenging to balance my commitments to Max and my family with that of work. Add to that, most work seems fairly meaningless in comparison to the importance of my role as my son's mother and advocate.

Interestingly enough, within the Autism community, attempting to care for your child is not enough to be considered a real "Activist". Within this community, you must not only advocate for your child, you must advocate for the autism movement! If you don’t, you aren’t a good mother. This adds a whole new level to the ideology of intensive mothering or those commonly held definitions of good mothering! Mothers of children with autism can never do enough. Additionally, fathers are not expected or judged in such a harsh light.

As mothers of disabled children we are marginalized, not belonging in the disabled world, because we are not ourselves disabled, while not belonging in the non-disabled world either. It is truly a no-win situation. I have been called overly emotional, aggressive, a vigilante and a bitch for pushing so hard to get a diagnosis and treatment for Max. Yet, I have also been called lazy, ungrateful and ignorant for not becoming an Activist and taking on the world for all children with Autism.

I understand that there will always be more that I could do, but the harsh judgements and criticism I receive regarding my mothering skills and ability are sometimes crippling. It is no wonder that the vast majority of mothers of disabled children never move from being an internal advocate to an external activist.

As an antidote to these unreasonable expectations, I wrote a guest blog post for the website AimingLow.com titled "accepting my imperfections in mothering a child with autism”. In this piece I confessed to letting my son watch his favourite episode - Happy Holidays Elmo - so that I could drink tea and surf Facebook. That I let him wander around the backyard moving rocks from one end of the yard to the other while I make dinner. I am also months behind on the assigned Autism reading from Max's clinical psychologist and feel dread when I see the phone number of his school appear on my caller ID during school hours.

The response I got was 100% supportive. Some commenters even thanked me for writing the piece. I had been worried that I would be told "you are a terrible mother and should be ashamed" but instead received a resounding chorus of "me toos".

Recently, I left my full time position of "Marketing Manager" to take a part time position that will allow me to work out of the home. Interestingly enough, the role is "Community Moderator" for the women's website iVillage.ca, which has just launched in Canada. It seems a good fit, and one that marries my needs with my skills while also allowing me continue to write and advocate through my website. Prior to having children I would not have expected that this would be the direction my career would take. But now that I'm here, I can't imagine it any other way.

So many people say "I don't know how you do it - you are amazing" and to this I say, "No I'm not, I'm doing what any mother would do". But perhaps I need to update my response and say "I'm doing what any mother is expected to do". I do the majority of the work within the house, advocate for my son 24-7, do my best to also meet the needs of my neurotypical 3 year old daughter and my husband. All of it unpaid and undervalued.

It is no wonder that I have embraced social media as it is truly the one place I have found "my people" - mothers of children with Autism who without ever meeting me, understand me and support me more than the majority of people in my day to day life. Together, "my people" and I are writing a new kind of guide book that is truly supportive, rather than one that judges and sets unreasonable goals. I hope you will join us.

7 comments:

  1. Anonymous5:01 PM

    Great presentation.

    ReplyDelete
  2. Fantastic!! I wish I could have been there to see it too. Good for you!!

    ReplyDelete
  3. You tell 'em girl. Eloquent. Awesome. Heart-breaking and inspirational all in one.

    ReplyDelete
  4. Really, really, raw and honest and so full of truth. Your strength is, as always, beyond humbling. Love you! xoxox

    ReplyDelete
  5. Anonymous10:16 AM

    Such an amazing blog post. You are an incredible woman. Thank you so much for uplifting me in my own struggles as a mother of a child with a developmental delay.

    ReplyDelete
  6. Christina9:07 PM

    Thanks for this post Katrina.

    ReplyDelete