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.



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