Sandy vs candy

As the tail-end of hurricane Sandy is pounding against our windows and I'm reflecting on my two older children's concerns of how She will affect their favourite day of the year, I also find myself thinking of how Sophie will view Halloween, now or in the future. Granted some non-autistic 2.5 year olds might also be slightly wary of the tradition or scared even perhaps. But most kids that age are just starting to love dressing up and pretending to be princesses, or knights or pirates. Not Sophie though of course.

So someone asked me what Sophie will be for Halloween. And that rather benign question sparked an entire philosophical debate in my head (have you ever had a philosophical debate with yourself? I seem to more than is probably healthy). And it went something like this.

Me 1

Autistic kids don't pretend or use imaginative play. What is the point of dressing them up?

Me 2

Oh come on it's Halloween! Won't she look so cute dressed up as a little bunny? Or Thomas the tank engine??

Me 1

She will no doubt. But she won't give a crap. Will it benefit her in any way or is it purely for my selfish pleasure?

Me 2

Well what about those people who dress up their infants? Or dogs for Pete's sake? Do they benefit in any way? But aren't those dressed up dogs ridiculously cute?

Me 1

They are just. But what about accepting Sophie for who she is? I don't think she is a costume kind of gal. Is it right of me to try to mould her into a "normal" little girl for my sake?

Me 2

But aren't you trying to do that anyway? What about all the therapies etc? Shouldn't taking part in a culturally-accepted ritual be seen as part of social conditioning?

It went on for a while after that but you get the gist. It's an often-recurring concern of mine; helping Sophie reach her potential and pushing her limits, while allowing her to stay true to herself. I fear it might be all too easy to coerce a nonverbal person, especially one as passive as Sophie. She gets defeated so easily. Of course she is so young still and all toddlers are coerced one way or another in their daily life. I guess what gave me pause is the fact that Halloween is supposed to be fun and I believe that you can't "teach" someone to have fun. They know how to do it themselves, whether we approve or not. So I think this year we will skip the costume and just stick with a cute Halloween shirt I couldn't resist buying. But who knows? Maybe next year the other Me will win.


Oh, and another thing;

They're he-re!



Socializing, low muscle tone and for the love of snacks!

As I mentioned in my previous post, resources for autism in my area are all quite limited and wait times are long. So we do our own brand of homemade Autism therapy and for the purpose of socialization we attend a local play group 3 times a week. Sometimes less, but we aim for 3.

I've taken both of my older children to local drop-in centers when they were younger so that part isn't new to me. However taking an autistic girl to a drop-in play group is an exercise in patience and humility. First there was the issue of finding one she would enjoy (and me too). The one both my older two kids attended wasn't right for my little girl. Something about the layout, kitchen set up and overall structure was the wrong fit for us. She didn't feel comfortable and neither did I. The attendance of that group also leaned heavily on nannies and while they were all nice enough, the mom connection just wasn't there.

Not feeling it

I also discovered that if the space is too small and feels too claustrophobic, Sophie won't even attempt to engage and will instead hover by the door. So two more centers were rejected for that reason.

But then a good friend of mine recommended a play group just outside of our neighborhood that I instantly knew would work. It is located in a former school, one classroom houses the spacious and colorful toy room (not that Sophie cares for toys, the bright rug is probably more interesting to her) and across the hallway is the gym filled with ride on toys and a little playhouse with a slide which she does enjoy. And, probably the best part is that in between these two rooms is a small lobby with 2 leather couches which we can retreat to when she needs a break.

And so we went. Some days she is in a more playful mood than on others but in general she does very well. She is happy from the moment we pull into the parking lot. She smiles, she rolls on the rug, she looks at trees through the large window, she listens to songs... She is having fun in her unique Sophie way. Because she is quite delayed in her gross motor skills I do have to help her with climbing and sliding and usually have to pick her up a lot (while having her baby brother strapped to my chest most likely). And sometimes she falls down and since she can't get up off the floor I have to scoop her up. But even though it's probably so much more difficult for her to participate because of autism and spd and motor delays I'm so proud of her for trying and being her usual smiley self as she does. She is pretty awesome.

There is one thing though that my little girl is really, really good at. She is a champion at snack time. She can easily work through 5 helpings of the familiar toddler fare of diced fruit and crackers/dry cereal, casually picking off her neighbours' plates if I don't refill hers fast enough. Since she is on the GF/CF diet for now, I bring my own crackers and just take the fruit. The other reason I bring my own is because frankly it's a bit embarrassing to keep going back for refills. She is always the last one sitting at the table and with panther-like reflexes can spot a halfheartedly attended plate two tables away. The girl sure loves her snack time.

Did someone not finish their food?



OT's visit and the topic of wait lists

The diagnosis of Autism was followed by a flurry of activity. Hardly a day went by that we didn't have an appointment, received a phone call or met with some sort of specialist. We restated Sophie's entire life history countless times, eagerly latching on to any promise of help. We had felt helpless ourselves and were still hopeful that someone will come in and devise a "fix Sophie plan" which will yield immediate and profound results. However after speaking to each sympathetic yet visibly overburdened worker we began to realize there was no such plan. Each phone call interview placed Sophie on a wait list spanning a couple months to over a year long. Everything we read stressed "early intervention". How is that to happen if she is to wait optimistically a year, realistically closer to two for IBI, apparently THE autism therapy method?

I suppose that many parents resort to dipping into the bank account and opting for private therapy. Unfortunately that is not realistic for us. At the same time we do wonder if we really want her to be drilled for 40 hours a week, rewarded with a tidbit of food for each socially appropriate gesture she is able to replicate. Perhaps in this case the waiting list is a blessing, buying her some more time to just "be", regardless how unproductive her just being is seen as through the prism of ABA.

Sophie being Sophie

However, even in this seemingly bleak purgatory of bureaucracy and wait lists, we did meet some wonderful and dedicated ladies who will begin working with Sophie in a more timely matter. We have met with the speech therapist previously and the occupational therapist today. Both seem to "get" Sophie, the OT especially. They gave us useful pointers which we will definitely implement in our own little home-run Autism centre. On good days I think we are doing well. But on not-so-good days I worry that we are missing the critical period, that we should be striking while her neurons are hot so to speak. I have a feeling though that there would always be self-doubt, no matter what we did.



How our journey began

Great eye contact, engaged

We didn't always know Sophie had autism. In fact, in the first 18 months of her life she was as unautistic as could be. We joked she was our most social child (she's the third of four siblings), as she never seemed to have gone through the shy phase that marked both our older kids' early toddlerhood. She was unique always, though it is only the wisdom of hindsight that judges her uniqueness as something indicative of a disorder that would have made such an impact in just a few short months.


At the time we delighted in this gorgeous creature who hardly ever cried, never fussed or seemed unhappy and had an air of quiet repose always. Nothing pointed to an abnormality, quite the opposite. She seemed to be developing beyond her peers with what we judged as incredible maturity and self-awareness. She walked late, which only added to her cerebral image. At 18 months she had around 50 words in her vocabulary, including the names of all family members and many of our friends. She would greet everyone with a "hi!" and a grin. We saw our pedeatrician for the big developmental checkup at that time and left with only mild concerns regarding her not walking yet and none whatsoever regarding her social/cognitive/emotional development.


Camping, playing with sand toys, interacting with older sister. No indication of autism

Little did we know that in just 6 months we would be back in his office completing the autism checklist, which was followed by a developmental pedeatrian's evaluation and subsequent diagnosis of Autism and Global Developmental Delay.


The Regression

The year of 2012 began, as in many households with small children, in a stream of colds, flus and general malaise that ceaselessly cycled through our family from January through April. Since any given week we were all either sick, recovering or both, initially Sophie's regression went unnoticed. We had also assumed that since she had finally started walking, learning new words had been temporarily put on the back burner. Around Easter she came down with the nastiest bug yet. A violent stomach virus raged through her little body for 2 weeks, leaving her frail and emaciated. Naturally we didn't expect her to be working on any new milestones as she recovered. Another month went by. Her appetite returned, her cheeks got rosy and her body regained its plump roundness. And we had to admit it then- our Sophie was gone. Her once bright and inquisitive eyes stared blankly above our heads. When was the last time she played with toys? We couldn't recall. We started to desperately try to engage her as she stared fixedly at the tv, Thomas the Tank engine, the only show she ever wanted to watch. When did it become an all-encompassing obsession?


Our realization of the occurring regression didn't stop it. Like a tornado destroying everything in its wake, the neurological storm that was going on inside our daughter didn't recede until it stripped away whatever it could, leaving just a shell of the vibrant little girl that once was.


And Now

Off in her own world, among the leaves in the trees
Sophie doesn't speak. She doesn't play with toys. She doesn't want company, actually she seems to prefer not to have it. Engaging her in interaction is difficult. It is unclear what she does or doesn't know or understand.

But... She is still sweet. Her smile still melts our heart. She is still seldom fussy or unhappy and she still exudes calmness and repose. She is worth fighting for and we won't ever stop.


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