Can someone tell me: is my daughter Autistic or does she have Autism?

If you think that as a person who isn’t touched by Autism, you aren’t sure how to describe it or whether you are being impolite or incorrect, rest assured, my kid has Autism and I’m as lost as you.

We noticed our two-and-a-half year old, Téa wasn’t reaching her 12 month milestones. By 16 months, with the trained eyes of parents to two other little ladies, we knew we needed to start asking deeper questions. Our journey took us to the mouth of a wolf called Creatine Transporter Disorder (CTD) that nearly devoured me whole and had me begging that the disorder was “just Autism”.

Eight months later and with CTD ruled out, and a tag of Autism formally affixed,  I’ve come to think a lot definitions and meanings.

It’s likely you’ll meet some parents who are convinced it’s a condition to be cured, others who are adamant that its a way of being and there is nothing wrong with their child.  As a new comer to this brave new world, I’m still unclear: is my daughter Autistic or does she have Autism?

It’s a subtle difference, yet, subtle can be very powerful.

First, if she is Autistic, this is as much a characteristic of who she is as the conditions she faces. It means, to me, that no matter what advances she makes and how “un-Autistic” she may seem one day, she will still be Autistic.

On the other hand, if she has Autism, somehow, the implication is that perhaps one day she won’t have it; that if she continues to kick-ass in lessons with her therapists (she goes to Abili-T now), and we continue to lavish glee-full eruptions of praise, slow things down for her to be able to gain mastery of small tasks and gestures, talk to her slowly and repetitively (all the while assuming she understands), the day may come when Téa steps off the Autism Spectrum and into the neuro-typical pool most of us find ourselves in.

Of the many grueling aspects of getting an ASD diagnosis for Téa, one I continue to struggle with is how to talk about Autism. How to define it to my other young children and to family and friends who are comfortable in asking, and how to describe how Autism manifests in our daughter – which I’ll tell you is ever changing.

Having described it at our house as a word that describes how a person’s brain organizes and uses information was simplest way I thought of to explain it to our 6 year old  and 4 year old.  And yet it falls short, because understanding the word doesn’t make it any clearer to them; they still worry about what it means about their littlest sister, and mommy can’t quite figure out what to say without saying things that totally un-pc.

I am keenly aware that how we define or describe  something says very much about what it means to us and can shape perceptions and feelings for others.

So, as a parent with a young child on the spectrum, see myself as having a special responsibility for how I talk about Autism  –  even as I tease out what to say about it, and despite being certain that what I say will change as I journey along this brave new world my daughter was born into and brought us all along with her. It will change as I become more comfortable with the diagnosis. It will change the more I talk about it and idea’s get clearer, and it’ll change as my daughter grows and the day comes that I need to explain this to her.

In a house where we don’t strive for normalcy (I was the proud bearer of a purple/yellow “Why Be Normal”) and discussions of different/same don’t often arise because by-and-large for our kids there is no “one” normal, is our two-and-a-half year on who experiences life on the spectrum different?

According to our family philosophy, she isn’t. And yet, she is.

The signs of difference are everywhere and in everything: what Téa can do, to how she reacts in different settings, to different things, and with different people.  Which is why the “See Things My Way” campaign created by the Miriam Foundation has the potential to be so very profound; it if they take it all the way – as I would if it were a campaign I was running – it can help create healthy, smart, relatable definitions that foster understanding across the spectrum which to me, encompasses all of us; because we are all somewhere along the spectrum of Typical.

As I think about how I see things and how I talk about things, my mind jumps to how we are defining Autism in our cultures and societies. How are we permitting government services, and the revenue agency to define it?  How are we accepting that medical bodies define it and classify it?

And what role do we need to play in those definitions as the parents, caregivers, and family members who understand it most?

I learned recently that Aspergers is a culture, not a neurological/communications disorder.  I couldn’t wrap my head around it,  but I can say, ok,  if as an Aspergian you tell me it’s a culture, then please, tell me more and  eventually I’ll understand.

So as my family and I embark on this journey of exploring what it means to live with Autism, raise a child with Autism, and exist in a typical society with ever evolving definitions of oh so many things, I’ll keep telling you all more, and eventually, I’ll understand and hopefully you can too.

Advertisements

There’s No Morning Glory.

I know all the rules.

1. pick clothes out the night before and set them out.

2. have breakfast at least partially prepped the night before so that you have less to do in the morning

3. wake up before the kids so that you can get yourself together and your head together before your thoughts are invaded.

I’m not good with rules. I like it when others follow them, but me – I’m a lost cause.

So while I know that the Start-The-Day-Off-Right rules are designed to help me get the morning off to a cheerful organized start, it’s hard to remember that as I flail about in a semi-dream state while my daughters yank me from my sleep by either drop licking me in an affectionate fly to precisely where my soft stomach is exposed or whining in the most irksome and ear-cringing way.

Instead, I try to swallow my yell put on a smile and welcome the day opening my eyes to a little face in my face. Those are the good days. When Sienna comes to see me, I usually end up with her loaded diapered butt in my face and as has been the case on an unfortunate number of mornings, she opts to perch herself – loaded diaper and all – on my head.

That my days start late and with a lot of negotiating, whining and yelling more often than not deters me from having any more of these things we call children. These little people we “painted” to quote my Naya and unwaveringly (most of the time)  adore.

Mornings at our house are truly awful. It’ll take me a good hour to come back to center and focus after dropping off the girls and that’s after it took so long to get them there in the first place! I won’t even tell you how long it takes. It’s embarrassing.

I can get through the ‘during the day stuff’. I manage to be funny, enlightened, connected, warm and positively challenging. But come bed time or when morning swings around again all I want is to dive into a tea – or martini rossi depending on the day – or into the couch with a book or a movie block out the fact that I have mommy duties to perform.

This morning, Noosh and I hugged it out for a solid three minutes. She was so upset about her pants that she couldn’t even figure out what she wanted. When I asked if she preferred to change in to one of two other pants her only answer was “I don’t know what I want” – and that was pushed out by snotty sobs that shook her curly little head. So we hugged and rocked and I coo’d and she calmed. And we changed her pants.

I used to say that I couldn’t wait for this or that. Now I grip this moment in life so deeply that my nails dig deep into the fabric of life because experience has shown me and wiser people than me have told me that it only get’s harder from here.

A.

Tip’s & Tricks For When You Are Shit Out of Luck.

I’ve learned a few things that I feel have granted me a badge of motherhood. Just the first stripes…but still, well earned and worth sharing! So here goes:

If you’re out of juice, Electrolite fits the bill beautifully.

If you’re out of cream cheese, puree tofu and they can’t tell the difference!

If you’re stuck on how to get your kid to eat veggies, add them to tomato sauce and puree it all together. They can’t separate the tastes. Same goes for Tofu (get the soft one, the others remain as little white dots in the food).

If you’re daughter or son pee’s through all the clothes they wore and all the extra clothes you brought, you can use your sweater or cardigan as pants. Here’s how:

1) stick their legs in the arm holes.

2) taking a corner of the bottom of the sweater (which will now be the part at their waist) wrap around their torso until it’s tightened and tuck the end into itself.

Ta-da!!!!

If your baby has pooped up their back and left you with nothing to put them in, a receiving blanket can be used as a toga.

If you want your child to stop screaming in the car, start screaming at the top of your lungs. They will hate this as much as you do and they will shut right up.

If your daughter is as bossy as mine, act as though everything you do was HER idea. She’ll go along with just about anything.

When you have to take them grocery shopping and all your children are in tow, pick up the item they like most first. They will play with it, eat it, lick it, chew it happily as you run through and toss things into your cart with the skill of a pro basketball player.

Useful? Want more? Either way, you’ll get it as I live it.

A.

To Think Or Not To Think, That Was The Question.

We enjoyed a visit from an out of town friend this weekend and as we always do, we gossiped, swapped life stories, and energetically conversed about several topics. One of those conversations has stayed with me because my perception of it was so different than what he shared others had said about the subject.

He asked me the following question (basically this question, I am paraphrasing because I never remember anything exactly anymore): Now that I have kids, do I find that I reflect less (or think less) about who I am and what things mean in relation to myself.

When I asked what he meant, he clarified by giving me an example in the form of what his friends had replied, which was that now that they have children, they’re the most important thing and the other stuff doesn’t matter.

I was still confused as I sat there with an expression that could easily have been that of a cartoon mom’s with an empty speech bubble hovering over my head, only now I was no longer confused about the question, but rather by his friends answer.

As I understand it, and feel free to comment if you understand the friend’s answer differently, his friend believes that because he has done “the most important thing” (having children), he’s beyond being reflective and feels no need to be so.

Okay, so now here’s me: The one thing that I have actually made it a point to think about more since having the girls is precisely that. Who am I in relation to them, and in relation to the world that they will be growing up in?  What do they see when they look at their mother? What impressions will be stamped in their brains about what it means to be a mother, a wife, a woman, a friend, a member of society? And if I am not actively cultivating the very best version of these that I can, who will?

I’m not talking about perfection – I’ m talking about humanity, humility, humour, empathy, the pursuit of passions and interests. I am taking about social responsibility, personal accountability and the joy of being a curious-minded individual.

It is up to me to show my daugthers that you can dislike something that someone does and still love them.

It is up to me to show my daughters that it is fine to get angry and frustrated, but not okay to act with disregard for another person’s feelings or to throw thing wildly about.

It is up to me to show my daughters that she has a duty to this planet simply because she is an inhabitant of it.

It is up to me to inspire a curiosity about books, culture, language, science, history, philosophy, mathematics, arhictecure, EVERYTHING and anything that touches her life.

And it is most certainly up to me to show my dauthers that they OUGHT to reflect about themselves and who they are being.

That, in my opinion, is what personal integrity is all about. So, yes, I reflect and more than that I follow it up with conscientious choices.

A.