Sleep study

Last night my husband, myself and our baby stayed with Sophie overnight at Sick Kids' hospital in Toronto for an EEG/sleep study, the purpose of which was to determine whether Sophie is having sub-clinical seizures. We know she isn't having any other seizures but upon meeting with the neurologist and discussing Sophie's unique history (the regression, falling asleep when stressed, odd night-time sleep patterns) she ordered a series of tests to get a better picture of Sophie's brain. We are totally supportive of anything that sheds even the tiniest light on Sophie's condition and perhaps autism in general.

Originally only my husband was supposed to stay with her, but the idea of being separated from her overnight was making me very anxious and sad. I am her primary source of comfort and wanted to be there knowing she would be scared by the procedure (the placing of the electrodes- she hates to be touched especially by strangers). Amazingly, the hospital had no problem with us all staying in the room together. It was considered to be an outpatient procedure even though we stayed overnight, maybe that's why regular visitor limits didn't apply.

As I thought, the worst part was the actual placing of the electrodes. Sophie ended up being swaddled in a blanket and belted to the bed. It was a very hard hour and a half. We tried to soothe her any way we could but ultimately it just needed to get done. The tech was very good and gentle. He bandaged her head and put a tube around the wires coming out of her head, which were attached to a little device which he put into a backpack. When we got to our room he attached the device to a monitor using a very long cable. Our Sophie looked like a character out of a science-fiction movie, a little cyborg if you will. Fittingly our sleeping quarters also looked like a room aboard the Starship Enterprise, so it all worked.

The purpose of the sleep study was to check for sub-clinical seizures and while I'm no neurologist, I don't think it is an issue at this time (and we hope it never will be). Regardless, we found Sophie's brain waves fascinating, matching what she was doing to bigger spikes and surges. Most of the time it looked like this.

But, interestingly when she fell asleep her brain became very active and the graph looked like this.

It's times like these I feel frustrated by the limits of my knowledge because I would love to understand what it all means! I googled of course and understood it to be normal but anyway I can't wait to talk to the neurologist about it.

Our visit at the hospital was as pleasant as it could've been given the circumstances. Apparently great care went to designing the hospital to not look like a hospital and it was a success. It looked more like a giant mall or a futuristic hotel. We enjoyed the view from our room so much we were reluctant to pull down the blind at night.

We took turns going for walks with our baby in the sling. It was a nice little reprieve from daily routine. Of course, I'm sure the reason we felt so positive about the experience is because Sophie was just undergoing a routine procedure, which we were not really worried about. We want to rule out seizures of course but so far haven't seen any evidence of Sophie having any. Since she was calm and happy once we settled her into bed with our entire collection of Thomas videos and the snacks we brought, we were able to relax as well. Our only reminder of the hospital being a place of worry and sorrow was encountering other parents strolling with their children, who were obviously much more ill than our Sophie.

It made me reflect upon how hard it is being a parent, and so much more so when our children are not well. It also brought the saying "finding strength you never knew you had" into a practical perspective. As parents of special-needs children we have to find that strength every day. If someone would tell us before we had kids that one (or more) would have autism, we would probably say "I couldn't possibly handle that". But yet everyday we get out of bed, and we do handle it. Just as the parents I saw at the hospital handle their lot in life too. Realizing it makes me want to put a real effort into being kind to ourselves and to the other parents we interact with in our daily lives. It is a hard job, whether our children are healthy or not, but we also can never predict what life has planned for our future. So let's try to be open to other parents, smile when we see them wrangle tantruming toddlers and say "it is so hard and I can see you are doing a great job!"




I haven't written in longer than i would like, got swept up in the pre-Christmas rush. There has been something on my mind though which i really wanted to write about. One of the main purposes for this blog is to have an ongoing record of what we are doing with Sophie and how it is working. I hope that will add a bit of a scientific method and be something we can review in months to a year from now while considering our next steps. Of course much depends on the progres Sophie makes in that time.

I have mentioned reading Stanley Greenspan's "Engaging Autism" and being inspired by it. I want to write more about it because it has made a tremendous difference in our lives and our approach to Sophie. He pioneered the DIR Floortime method. I won't detail its history here, but rather how we are utilizing it and the results we have observed. Dr. Greenspan outlined eight developmental milestones and the struggles that children on the autism spectrum run into alng the way and how to overcome them.

The stages are:

  • Regulation and interest in the world (engagement)
  • Intentionality and two-way communication
  • Social problem-solving, mood regulation and formation of self
  • Creating symbols/using words and ideas
  • Emotional thinking, logic and a sense of reality
  • Multicausal and triangular thinking
  • Gray-area thinking
  • Growing sense of self and a reflection on an internal standard

Prior to her regression Sophie was at the fourth stage, which apparently is not uncommon for autistic kids to get stuck at (or before even). The regression brought her down to ground zero essentially. She was a physiologically functioning vegetable with the ability to walk. Our world crumbled and the outcome seemed bleak. I can't remember how I found "engaging autism". Must've been through the mountain of books I buried myself under to not even find hope, but some glimmer of understanding. All the tips and activities in the other books seemed well beyond Sophie. Rewards? Incentives? We couldn't even get her to look at us. What possible incentive could we offer? I would also be lying if I didn't admit that the reward-based repetitive system of training makes me feel very uncomfortable. We didn't raise our other children this way, and we don't feel that we should give up our parenting values because Sophie is autistic.

Greenspan's methods and theories struck a chord right away. His reasoning and belief that autistic children can go beyond learning through repetition (although there is a place for that too) and achieve the ability to think, feel and use logic was something I do believe. I also believe that it takes much more effort and time and the author didn't dispute that at all (I hate idealists, don't you?)

So we have started tentatively, in September when school resumed for the other children. At first it was nothing more than joining her in front of Thomas. Commenting on the action. Maybe giving a little foot tickle. Other playful teasing. Throwing her up in the air, blowing raspberries on her tummy. But always relentlessly pulling her into our shared world - bringing her to play group in the mornings even though we spent most time in the hallway. Taking her grocery shopping, errands. And talking her ear off. Look at that, look at this, beep beep on the belly, got your nose, peek a boo... Basically meeting her at her stage of development which seemed to have been around that of a six-month old.

We didn't let her "space out" for a minute when we were working with her. But we were always gentle, never impatient. And for the first month not much happened. Subtle things maybe, but nothing to write home about (or in a blog). But then we noticed a shift. The girl whom we could probably leave alone for the whole day with Thomas and a bowl of food for a babysitter started seeking company! If my husband and I were in the kitchen she would waddle over and peek in. If I was putting baby brother down for a nap, she burst into the room with a goofy grin like "found you!" I don't need to say that never happened before. And the eye contact and tracking us around the room- amazing. In play group she plays, what a concept. She doesn't seem to have a reason to escape to the hallway anymore. And she is showing empathy, trying to comfort crying siblings.

We still have so far to go. But now that she's in our world with us, we are so motivated to continue. Seeing her little face peering intently into mine, feeling her little hand on my cheek using an almost blind approach to learning to speak. And of course her cheekiness- initiating peek a boo or chasing games. Giggling like crazy when we join her. It's like a chain reaction- now that she's giving feedback her older sister is trying to find ways to make her giggle. I feel hopeful again that some sort of a sister relationship is possible after all.

For other parents with autistic kids reading this - this is not to brag about our accomplishments or to advocate a particular method. This is merely a snapshot in time, where our life is now. If Sophie can engage, can enjoy being a participant in life rather than a bored bystander I think there are many things possible.





Autism and the Christmas spirit

The holiday season is upon us. It's hard to say how I feel about that really. On the one hand I enjoy the feel-good, warm fuzzy "holiday themed" idea of Christmas, with its cheesy but uplifting movies, red and white candy canes, fake-snow frosted pinecones and ceramic snowmen. I like how we bring a live fragrant pine tree (or Douglas fir, I'm not quite sure) into the house and how my older kids adorn it with their school and scout-made decorations... And some box-store baubles too, of course. I like the idea of crafty homemade jars of gifts and add them dutifully to my Pinterest board, but never seem to get around to actually making any. Maybe this year...

There are things that I don't like too. I don't like the mad dash shopping frenzy that seems to affect so many people. I don't like how stores put "great gift idea" on almost everything just to get people to buy it. I don't like that people feel they have to spend more money than they actually can, to keep up with some predetermined standard of a perfect Christmas. And I mostly don't like how all the Christmas marketing turns perfectly good children into greedy little monsters, coveting poorly-made trendy toys which they don't even really want and that will just end up in the pile of other stuff which they don't care about anymore. I'm actually quite pleased that my children are not acting this way at all - this year (they have had seasons of the mad gimme's, I won't lie). They will get presents of course. But I'm hoping they will be simpler, more creative things that they will actually use for a long time and not just things plucked from tv commercials. You can see my ongoing Christmas gift board here.

Is it me, or is there something behind me?

Thinking about this made me realize that Sophie will never be a part of that less desirable element of childhood. She is completely non-greedy and non-materialistic. Her wants are little more than basic survival needs - food, water, shelter, love, Thomas... (I bet you didn't realize that Thomas the tank engine is one of the basic human needs, did you?). She doesn't get attached to objects and doesn't mind if someone takes something from her. And I have a feeling that maybe, just maybe the reason her older siblings are not running around with toy catalogues and writing manuscript-length letters to Santa is because of her example. They see that she needs and indeed wants so little and perhaps they are a little inspired. I know that I am.

So how will Sophie react to Christmas this year? We put up the tree yesterday and other than being slightly annoyed by the change in her corner of the living room, she seemed oblivious to it. Regardless of what reaction she will give (if any), I will do my best to approach life like Sophie this Christmas season. I will be perfectly content and happy because I'm in a warm and dry home, have yummy food to eat and am surrounded by the people I love and that love me in return. And if Thomas needs to be in the background, so be it.




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




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.


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.


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.


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.



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.



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.



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.


Related Posts Plugin for WordPress, Blogger...