11.22.2012

Every little thing she does is magic

If somebody asked me to name a song title which describes how I feel about Sophie, it would be that one (by the Police). Perhaps other parents of autistic kids understand what I mean. We don't get to celebrate many milestones, at least not at appropriate times. But every ounce of progress our children achieve makes us tingle with equal pride to them delivering their valedictorian speech at graduation.

We so long for any sign of intelligence or engagement, we pounce on any half-glimpse or absent-minded touch ("did you see her just touch my arm!?", "she looked at me as she was stealing my cookie!"- wiping tear of pride from eye).

That said, when REAL progress occurs, look out! I swell up like a mama balloon and want to shout it from the rooftops. Of course that's not always the most socially appropriate thing to do, and anyway her accomplishments while monumental to me, are trivial to parents of normally -developing toddlers. So I will brag here :)

Sophie is making steps forward in her development. I don't know if it's a sign of growing up or if she's really learning a bit or if it's just a good stretch we are going through. But in the spirit of gratitude I try not to overanalyze, but really "live" in these moments and appreciate them for the tiny miracles that they are.

Little bits of magic Sophie's been performing lately;

  • Improved eye contact. She looks intently into my face as if saying "do you get what I'm saying?". I'm trying baby girl, I'm trying.
  • Looking for me in the house, for no apparent reason other than to find me. Then sometimes she will push me toward the arm chair and clamber onto my lap. She loves cuddles. Who said autistic kids are not affectionate? Sophie could cuddle all day.
  • Playing peek-a-boo, everywhere. Under her ramp, behind the trampoline. Last time at play group she went into a little toddler playhouse and peek-a-boo'ed from one of the windows, over and over.
  • The before-mentioned play house's doorway was too low for her so Sophie walked in with an exaggerated bow of the head. However, her odd sense of timing caused her to lift up her head at precisely the wrong moment, and receive a bonk on the head. Every time. And every time she came out holding her head with an over-the-top dramatic " uh oh" face. And we both made a big fuss of her injury. Every time.
  • Trying to talk! So far just the first consonants and approximations of words like "go" or "uh oh". Let me tell you the best sounds to my ears. She looks at my lips when I talk, forming her own lips into the right shape. She wants to learn, why is it so hard for her? Her favorites are short high-impact words like "go" or " push". She can listen to them over and over.
  • She is getting just ever so stronger and more coordinated. It is subtle to anyone who is not with her all day. But she isn't falling down as often. And walks faster with more confidence. And just this week she got up off the floor without pulling up on a chair-twice! And she climbed over a gym bench that blocks the entrance to the gym at the drop-in. Small miracles indeed, all of them.
  • Copying my yawns and sneezes. I sometimes do these unashamedly when I'm around my two babies. What, they're not going to scold me for lack of manners, are they? Well lately after a rousing "a-choo!" I look over and Sophie's face is open in a perfect freeze-frame of a sneeze. And when I yawn, Sophie "yawns" too. This is exciting because apparently autistic people lack "mirror neurons" which help us learn things by watching others. Perhaps Sophie has some of those mirror neurons after all.

So as our American friends celebrate Thanksgiving today (Canadian Thanksgiving passed quietly and unassumedly, like most everything around here, in October), I join in the spirit of thanks for the small miracles and for the magic Sophie adds to our life every day. I also thank Sophie for being present in the moment always and for slowing down the crazy pace of family life. If anybody embodies the spirit of Zen, it is her.

You can't rush genius

 

 

11.15.2012

Sophie's sensory diet

I thought it'd be nice to write a post about the things we do with Sophie at home everyday. I already wrote that we attend a play group three times a week for socialization, but we have also made our living room into a small sensory gym for her and we aim for at least an hour of therapy a day, but often it is more. She tires easily so it is spread into 15-minute chunks throughout the day. We live in a 3-bedroom apartment with 4 children, so I think if we can do it, anyone can!

Sophie's main issues right now are related to motor planning and body awareness, as well as sensory integration so we are trying to address those. I am also trying to encourage her to play or at least find something else to do at home other than watch Thomas videos. It's slow going, but we have made some progress.

The ramp

My husband made this for her. He is actually a carpenter, but for this project you really don't need to be. He was making a batch of them for my friend who happens to have a great shop of therapy products, and used extra material to make one for Sophie. It's just a piece of plywood, about 2'x3' with a low-pile carpet stapled to its underside. Both readily available at your local hardware store. We keep it behind the couch when it isn't being used.

It is a very versatile piece of equipment. Sophie loves to use it as a slide, the carpet provides some traction so she doesn't slide down too fast. We prop it up against the couch. We encourage her to crawl up to work on her strength and coordination. I'm also trying to make her realize that she can climb on the couch and get on the top of the slide that way. She can't quite wrap her mind around that yet. To increase her body awareness I help her do front rolls, back rolls, slide upside down, face first... The possibilities are limitless really. I also think that being a sensory-seeker she enjoys the feel of the carpet on her skin.

To add a bit of imaginary play we play peek-a-boo under the ramp. I look under it and say "where is Sophie?" and she peeks down and finds me. She enjoys that simple game. I realize that it's a game most enjoyed by infants much younger than Sophie but I was inspired by Stanley Greenspan's "Engaging Autism" book. He believed that it is necessary to meet the child where they are developmentally, not where we think they "should" be. So if Sophie is at the "peek-a-boo" stage, that is what we will play.

The mats

We picked up the foam mat in the shop section of the department store. It was around 30 dollars. It's a bit heavier-duty than the kiddie ones they sell. Sophie likes to do all sorts of yoga-like poses on it (all coming purely from her, I never taught her any). Having low muscle tone, she is incredibly flexible and seems to enjoy it.

The trampoline

Our OT loaned it to us for several weeks. Sophie loves it. She doesn't actually jump on it (she can't jump yet), likes us to jump for her. Most of the time she wants to sit while somebody else jumps and she absorbs the vibrations. I usually employ her sister for that job and she is happy to oblige.

Sensory toys

There are very few toys Sophie will use and she will only use them for short amounts of time. Still, I do like to encourage her to play with toys. She prefers bright sensory-type toys, like bead roller coasters or the abacus. She likes things to fall and make a clunking noise. I keep her favorites in her line of vision always and bring her attention to them throughout the day. She also enjoys the mirror and I've caught her making faces into it a couple times.

I'm also pleased she's been visiting the Thomas table which we've made for her (out of a discounted Ikea side table) more often these past few days. She used it extensively in the past and then all of a sudden stopped. I'm hoping that the rekindled interest is signaling a progression in her development.

Books

Before (and even during) her regression, Sophie loved books. She had books on her lap and would leaf through them constantly. Then like with so many other things, she suddenly stopped. I've been stubbornly reading books at bedtime with her even though at first she didn't seem to care in the least. Well, after several weeks she seems to enjoy them again and seems to like our bedtime ritual. And while she doesn't look at books anywhere near as often as she used to, she will do it sometimes, which is better than never I figure.

Swings

Sophie loves to swing. She could probably swing for hours if we'd let her. We have mounted a door way bar in the girls' room doorway and are able to attach all sort of things to it. My older daughter loves her gym bar. And Sophie loves her swing. We have a plain plastic one from a department store which is great because it's cheap, comfy and has a safety harness. Another bonus is that my baby will be able to use it very soon. We also have cuddle swing which is very nice for relaxing Sophie and providing deep pressure stimulation. We use our swings a lot.

Chewing

Sophie is constantly craving oral stimulation. When she doesn't have her fingers in her mouth she chews on coats, seatbelts or Wii remotes. She loved this Chew Noodle since she got it. It seems to provide the sensation she is looking for. The unfortunate thing is that is seems to go missing on a regular basis, but I guess that's a different story all together.

There you have it! Sophie's sensory diet. I'm always on the lookout for new things to add that she might enjoy. She loves bubbles and I'm looking for a squishy ball like the OT brought and she liked. I'm also researching flashing-light toys which Sophie really likes. She would love this. Down the line I might make a sensory table for her as I already have a great table for that purpose. I think she is not much into tactile stimulation yet, so I'm not rushing into it. Might be a spring balcony project.

At the same time I'm planning to create a simple PECS board for her very soon. She is very visual and I have a feeling she will catch on to it very fast. I will write about it when I get to it.

 

11.11.2012

Cracking the Autism nut

I am not a person that enjoys realms of the unknown. I pride myself on being an organized, sequential thinker, a problem solver. It shouldn't be surprising then that autism, along with that frustrating puzzle as its emblem is continuously running through my mind, like a song stuck in your head, the title of which you can't recall but you're determined to make yourself remember. No matter how many times I try to accept it as the puzzle that it is, I feel my mind whirring on it, spinning its wheels helplessly, running it through over and over even as I attempt to distract it with other tasks.

The staggering amount of conflicting autism information currently available can be very overwhelming to parents just coming to terms with a recent diagnosis. I for one initially did as much research as my poor overtired brain would allow which led to a period of autism burnout, when I deliberately avoided reading anything new because I found it all too contradictory and confounding.

What I did discover pretty quickly was that the autism community is quite divided. So naturally I had to try to find a slot for myself, stake out my little piece of autism land so to speak. I went through a (very) brief infatuation with the "cure autism from the inside" camp. However being a jaded sceptic, for better or for worse, I didn't linger there for too long. I consider it as being in the bargaining stage of the 5 stages of grief- "she will be fine when she gets toxins out of her body/eliminates gluten/gets the right vitamins and supplements".

I then turned to more scientifically proven approaches. Surely if one can make dogs salivate at the sound of a bell, then one can make autistic kids build a block tower? I have no concrete results to report yet however, as we are presently on the scientifically proven wait list for that service.

But i still read autism news and research and once in a while i'll read something that gets my mind going again. I came across this study last week. It basically says that contrary to popular belief, most infants who go on to develop autism do not show signs of the disorder at 6 months of age. At first read I totally agreed. We are among the parents who did not suspect autism until much later than 6 months in fact.

However as I dove in deeper into research of this topic, I found this study from May. This one I'm sure many people have heard about since it's been around for a while. It says that in a sibling study done on kids at a heightened risk of autism, those without good head control in a specific test were found to be much more likely to be diagnosed with autism at 30-36 months of age. According to that study Sophie did show early signs of autism, which went unnoticed.

Whenever I come across a study that offers insight into Sophie's autism, I can't help having mixed feelings. On one hand I am happy other parents have access to information we didn't. On the other, I can't help thinking "if we had known..."

Then what? Would we have done anything differently? Perhaps. Would we have been able to "save" Sophie? Not likely. But there is always that nagging feeling like we missed something that was there staring us in the face all along. So as i keep living in my little corner of autism land, I will keep reading, and thinking, searching for clues like some autism Sherlock Holmes, trying to form the puzzle pieces into a cohesive whole. And just maybe with the combined effort of other citizens of this vast and uncharted continent, one day the autism symbol will be a puzzle solved.

 

11.04.2012

Perfectly healthy except for a bad case of Autism

On Thursday I met with Sophie's developmental pediatrician to go over the very thorough bloodwork we had done at the time of her diagnosis. I suppose I wasn't very surprised that it came back fine. But I was surprised at the bittersweet feelings that went along with it.

I guess a part of me was still holding on to hope that the blood tests will reveal something. Something that could be fixed of course. Perhaps a rare metabolic disorder that can be treated with enzyme supplements. Or maybe a mercury toxicity that could be cured with chelating agents. And I have to admit that maybe that part of me was still holding on to the hope that somehow these blood tests will give us a clue as to how to get our little girl back.


Perfectly healthy and perfectly autistic

That did not happen however. The blood tests confirmed what we already knew in our hearts: Sophie is a very healthy little girl who happens to have autism. The autism isn't detectable on the blood test and yet it is in every part of her; in her nerves which misinterpret and distort input from her senses, her weak little muscles that make everyday tasks so difficult, in her little tummy so much more sensitive than any of her siblings', in her skin prone to frequent rashes and irritation and of course in her brain which is enclosed like a silent fortress, unable to comprehend the subtle nuances of behaviour we understand to be a part of being human.

The blood tests did not show any of that though. The numbers and percentages fit perfectly with that of any other little girl her age. So is this what closure is supposed to feel like? Now that we got the "medical stuff" (as the doctor put it) out of the way, do we breathe a sigh of relief that she's ok, "just" autistic? I do of course. And yet...

How can I feel closure for something that isn't closed, actually it's barely been open? We are just starting our journey and now our path has been brought into sharper focus, with all side roads pruned away. She is autistic and there is no cure for that. But she is "healthy". And so it begins.

 

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