4.27.2013

A little less conversation

I'd have to say that for me personally the hardest part of Sophie's autism is her nonverbal-ness. I am a hyper-verbal person- a reader, a writer and a TALKER. I love lectures, metaphors, literature, psychobabble, analyzing and over-analyzing books and movies... Yup I definitely exist in the realm of verbosity. I couldn't wait for my kids to develop language so I could read them stories, tell them about the world and answer all their questions. Before they talked I had only a vague idea as to their personalities, but when we could communicate they came into a sharper focus as real little people with unique opinions and thoughts. I loved that.

Sophie started out talking, quite early in fact. She had a lot of nouns (usually food-related) and names (friends, family and Thomas engines). She had between 50 and 75 words in her vocabulary I'd estimate. Most of the time she would repeat after us or use words to request things. She also liked listing names of friends who came to visit that day (lots of little people visit everyday). I have to say I took her speech for granted. Yes, she talked early, but all my kids did. I never expected her NOT to talk. So when she stopped I assumed it was temporary. Surely if we keep talking to her she would start talking again right?

It's been a year since her regression. She's come a long way in that year. But while her pre-verbal skills seem to be intact (she babbles, makes requests, eye contact, even uses PECS if so inclined) speech still eludes her. She does have a couple short words and her babbling seems to be getting more complex. I long to hear her voice though, hear her chatter once again. She was a real chatterbox as a one-year old. How fleeting were those moments, how quickly they slipped into dreamlike memories.

But it is bittersweet. Days spent with a toddler who is unnaturally quiet have a meditative, zen-like tone. Many times I catch myself chatting incessantly and really, needlessly. Does she care about my constant drone? Look at this, look at that, see the plane, see the squirrel. She sees without me pointing it out I'm sure.

Sophie on one of her many paths

If she doesn't think in words how does she think? I think she thinks in pictures like Temple Grandin; she is an intensely visual person. I suspect she has a photographic memory too. Her special talent is routes and directions. This girl is able to process the layout of a location the first time she visits and find what she is after without any effort. She's shown us over and over that she can retrace her steps backwards to the entrance of a store she's never been in before or to a specific room in a multi-room school.

Sophie forced me to step out of my comfort zone. Move out of the verbal language mode and into a more visual one. I already model more than explain, do instead of say. But many times I still feel the need to narrate my actions, rely on words to convey my message. And I know that is important too, to familiarize her with the language which I know she will use one way or another. But I want to make the effort more often to visit Sophie in her world; full of images, and paths, and trees. And just shut up already.

 

4.21.2013

Spring musings

The arrival of spring makes everything more pleasant. I am definitely a warm weather person. I start dreading the coming of winter in September and I find them harder to bear every passing year. Perhaps should consider moving to a 3-season climate. I have no issues with spring and fall, I quite enjoy them both actually, but winter brings me down.

What does that have to do with Sophie or autism, you ask? Well nothing directly. But indirectly, a sluggish or depressed mom has everything to do with everyone and everything in a house. I don't feel depressed in the winter, or at least I don't think I do until the first real sunny, warm day when I feel a surge of renewed energy, almost as if the wind is whispering "everything will be ok, everything IS ok" into my ear. I feel strong, I feel fit. I strap the baby on, I put Sophie in the stroller, heck I even take the dog and we GO. We've had some good walks already with the kids and the promise of more is in the air. We're in a very strolling-friendly neighbourhood, steps from a park and a few more steps from the lake.

Sophie is stronger this spring. She is more sturdy, she can navigate grassy fields, small hills and sidewalks pretty well. I'm not as worried she will fall down and hurt herself as I was last year (she did fall down and hurt herself a lot). She seems compelled to practice her gross motor skills. She'll pick a task, like a curb and go up and down and over it, trying to master it. I always admire her so much when she does that. Sure, it might just be the repetitiveness-loving side of her. But often she seems to be repeating tasks that are quite difficult for her, like thresholds, curbs, stairs, almost as if some part of her knows she needs to practice.

I think she is like me in many ways. She is very happy to be outside. It seems like she has a special connection to nature, trees especially. Since she was an infant she'd gaze at trees for a long, long time, an expression of wonder and quiet happiness on her face. She still does it. I see her head half-turned to the side, her mysterious smile and ask "what do you see there Soaps?" But then I look and see it myself. Do you ever stare at the branches of trees swaying against the blue sky? You should try it sometime, it's good.

Swings are the best

I'm looking forward to picnics at the playground. After school on nice days many parents stay around at the schoolyard and let their kids play. On really sunny days the grassy area is littered with blankets and snacks and kids of all ages (little siblings come to pick up their older brothers and sisters from school). There's something so fun about eating food on a blanket outside. It makes me happy and seeing the kids running around with their friends makes me happy too. Will Sophie play with a friend one day soon? That would be so nice.

Sophie lovin her gym time

A lofty goal for an autistic 3 year old you say? Perhaps. Although, I think if that goal is broken up into small steps it is accomplishable. Last time we went to the toddler gym with Sophie we did a little experiment. She was doing her own obstacle-course path like she does and I added the element of saying "bump" at one point when she was plopping down on a gym mat. She incorporated that step into her path and seemed to enjoy it. So next time she came around, I added the element of high-five after the "bump". She liked it too. But then I challenged her more. Her older brother came with us so I added "high-five to Jake" as the final element. She was definitely challenged by it, but did it! A little shyly and a little uncertainly, but did it. And as she kept repeating her obstacle course, she kept the added elements in (I prompted her a bit on the "high-five to Jake" part).

So we're keeping on. I read something on this blog that really resonated with me. The author writes how she takes her son to the edge of competency and then one step beyond (read it she explains it really well). Her words ring in my ears often when I interact with Sophie. It is a concept that really works for us. It ensures that Sophie trusts that I will lovingly support her while providing just one extra challenge every time.

It is rewarding to see our hard work paying off. I'm looking ahead to the next couple (warm) months with quiet optimism. And now I'm going to go plan my balcony vegetable garden with my big girl. Yay for spring!

 

4.08.2013

Good times with Soaps

We've been coasting with Sophie lately. Not coasting as in doing nothing, but as in everything just flows and feels so good.

So naturally I'm worried.

I read the blogs of others. Sophie is different than most other autistic kids out there. I have no idea what to expect, what prognosis to anticipate. I don't even know what the severity of her autism is. These are things that are all beyond my control and answers no one can give me. When she received her diagnosis last August it seemed she was quite severe. It happened at the absolute pit of her development, the lowest of the low. She was either asleep or slumped on my lap, or watching Thomas, impossible to engage or interact with. That is not Sophie now (thank goodness).

She is still autistic, no doubt. Delayed in terms of normal almost-three year old development, and still not talking. But she is with us, part of the family, not apart. Her world opened up so much. Whereas before if someone asked me what she likes I'd say "Thomas and food". She still likes these two things now but she also likes so many more, such as swimming and playing outside and going to playgroups and toddler gyms... She makes a mess in the living room now because she is actually playing with her toys and moving things around. She seems to respond more to instructions like "come here", "hold my hand", "let's walk". All useful things. And she is so easy going, compared to other autistic kids and many non-autistic kids too. That is the mystery of Sophie.

For example, it so happens that several new programs started this month. Our city-run rec programs run in 3-month increments and a new session just started. This time I signed up Sophie for a parent and toddler gym and a swim class (also parent and tot). These are not "special" programs, they are the same classes all kids in the city attend. Coincidentally we also started a new playgroup at a fabulous special needs nursery school (which we found she will be going to in September- yay! Another wait list down). This playgroup is every Friday for 10 weeks and I will attend that with her. So 3 new things all starting pretty much in one week - recipe for disaster, right? Nope. Sophie handled herself like a pro and had fun in all her new classes, I was probably more out of my element than her.

I think part of the reason she is so comfortable is because we do a lot with her everyday. We take her places with us, changing her scenery all the time, not allowing her to get stuck in a rut. Would we be taking this approach if she wasn't so easy going as a baby? Who knows. I'd like to think we would but I guess there's no knowing for sure. Another reason might be that most of these kiddie gyms, playgroups etc look pretty much the same. You got your toy cubbies, your bright rug, some small tables and chairs, a playhouse... The specifics change but the gist is the same. In the gym you got the mats, the slide, the trampoline, some balls and other common gross motor implements. They usually follow a similar routine, starting off with free play, then a circle time, then a snack time, then bye-bye time. I know of course that some kids notice every single detail that is new or different and it causes them great anxiety. Thankfully, while I believe Sophie also pays attention to all details she's not really bothered by change and adapts quite easily.

Lately I'm often trying to figure out what is "autistic behaviour" vs "toddler behaviour". It's tricky! Like for example sitting at a table to eat. She doesn't. I thought it was an autism thing or assumed rather. But did I assume correctly? My older kids sat at the table because I expected them to and reinforced that behaviour. With Sophie I pick my battles and didn't pick that one. Does that mean she can't learn to sit at the table to eat? I am sure that if I spent minimal effort to teach her she would without a problem. It also has to do with the fact that I'm busy and got lots of kids and if Sophie runs in and grabs a meatball and runs off again happy I don't feel like chasing her down, bringing her to the table kicking and screaming, making her sit and then hovering near because she's likely to fall off the chair. Or maybe because I am now a mom of many I loosened my perfectionist standards just a wee bit to preserve (some of) my sanity and figure that maybe the nursery school people can teach her to sit at the table to eat (oh my how embarrassingly negligent of me).

That brings me to the subject of discipline or rather "getting away with stuff". I did have more rules for my other kids, no doubt about it. Sophie really is just expected to show up, with bonus points for no hitting. She watches more tv than everyone else in the house combined (we're working on it), eats in the living room (see above) and pretty much has a sweet deal going on. I think it has to do with what I said at the very top about really having no idea as to her level of functioning. She seems to be climbing quite fast on her functioning ladder, so fast that she's leaving us behind with our low expectations. She's come such a long way since August. But she is still not very verbal (she has a couple words and word approximations which she uses more or less consistently) and I can only guess as to her receptive language level. Her autism makes her not overly concerned about showing off new skills or sharing her ideas so who knows what hidden talents she's keeping from us.

I know more than you think

Sophie is a super-cool little girl. I think I gotta raise the bar up a few notches. She can handle it.

 

 

 

4.02.2013

A year of awareness

And so apparently it's Autism Awareness Day and everyone and their autistic uncle is writing a post to spread awareness.

This is our first awareness month as last April we just began to realize Sophie is probably autistic. Kind of ironic really, I guess we were really made aware huh.

I am not a preaching, spreading the word renegade or advocate you might have noticed. Yes, autism is the biggest thing in our life now but I understand if it isn't in yours. Maybe debt is. Maybe infidelity. Maybe cancer. Or maybe your kid is flunking math, smoking dope and a general pain in the behind. I understand. We all have lives, who am I to try to sway you to my cause.

The word awareness is an odd one for me. For me being aware means knowing something exists. Do some people still not know autism exists? What rock have they been living under? 1 in 50 now and all that...

But I can be a good sport. I've never been a joiner but I'll hop on this boat. I don't want to bump into the boat that's arguing semantics though, the "should-it-be-awareness-or-acceptance-or-action" boat. It looks like a rough crowd there, I don't want to get caught in the middle.

So if I were to talk to someone who doesn't know a lot about autism about Sophie, what would I say?

 

This is Soapster. She isn't a poster child or a cause or an "issue". She is a little girl whom we are crazy about. She is happy and go lucky and if she likes you, you will know it. She does most things differently from other kids, like she doesn't play and likes to run in repetitive patterns. But she does some things the same too, like loves getting kisses, and being tossed in the air and going down the slide. She loves fruit and Thomas most of all. There is a lot we don't know about her yet. We wonder if she will ever talk, how much she can learn and what her future holds. We think she is a clever little girl who knows more than she lets on. We hope we can unlock her potential. But most of all we want her to be happy, surrounded by people who think she is as wonderful as we do.

And what would I want people to know about being an autism parent?

At the beginning it feels as if the rug has been pulled from underneath you. Everything you knew or expected of parenthood is turned on its head. You doubt your every decision and feel as if you don't know your child at all. There are some people that feel obligated to tell you what you are doing wrong and what you should be doing instead. You read books and blogs that make you feel inadequate and like you're not doing enough. But with luck, you find your groove. You figure out what works with your values and what doesn't. You get braver refusing options or "helpful advice" from strangers. You settle in for the long haul. You want the same for your autistic child as you do for your other kids- acceptance, friendship, opportunities for fun. You desperately want them to be included, invited. Every slight (real of perceived) results in your heart breaking just a little. You wonder if, and hope that in the future your child will have a place in this world, a place where they will be not only accepted but integrated. Where their strengths will be acknowledged and utilized. Where they will be productive and satisfied. Different but not less.

And that is my square for the Autism Awareness quilt.

 

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