Accepting autism, even when people are watching

Being handed a diagnosis of autism for your child is a heartbreaking event. But it's not a clean break like a bone which will be put in a cast for several weeks and you can expect to make a full recovery. It's more like a bad knee which may hurt less on some days than others, but you can't expect it to behave like a good knee ever again.

The idea of acceptance sounds final, done. You either accept something or you don't accept it. But while we might say we accept that our kids are autistic, I believe most of us only "kinda" accept it. I don't think there is a line between "accepted" and "not accepted". I think it's more fluid and changes constantly, even throughout the day.

For me, I find it's easier to keep positive and upbeat. It's not repressing negative feelings, but refusing to dwell on them. But sometimes they creep up. It's usually a form of an out of body experience, when I step out of my mommy love for Sophie and see her as i imagine others see her. Autistic. Delayed. Odd. And I feel sad for her, for me, even though I have no idea what people are really thinking of course. They could be thinking what to have for lunch for all I know.

Sophie is still young enough not to raise too many eyebrows out in public but the clock is ticking. It doesn't help that she is quite tall for her age and could easily pass for over 3. At this age some kids are still wearing diapers. Some don't talk much. Lots still use strollers or are picked up by their parents when they don't feel like walking. Most however probably aren't wearing chewing necklaces or are missing half their hair because they pull them out compulsively. And so while on a casual outing to Ikea this morning, I realized Sophie is starting to stick out from the toddler crowd.

First of all she has no sense of boundaries. She will happily stroll over to a family enjoying their meal. Maybe lean on someone's lap, or grab their arm. After careful inspection of their fare, she might reach over and help herself to something that strikes her fancy. Of course at some point before this happens either my husband or I will have reached her breathless and apologetic. And attempt to extract her from the kind but puzzled family's table. Which will most likely cause her to flop limp on the ground, to which the only solution is to scoop her up like a pile of spilled cooked spaghetti and sheepishly wobble away.

She is always on the lookout for a great stimming place and she finds them anywhere. As an aside, the girl is very flexible with her stimming locations and if removed from one, will promptly find another. Her requirements are that they be large open spaces with two objects to run between. A support post and garbage can work well, among many others. She found just what she was looking for in the entryway to the restaurant. Her "run" is not really a run, but more of a stiff-legged speed walk. With arms flapping, humming and the expression of pure joy on her face. There is no time limit on this stim, but after fifty passes or so people tend to notice. Sometimes she pauses mid-run to stick her arm in the back of her diaper for a bit, then picks up where she left off.

Up on bunk bed. New favorite thing

Moving right along. Sophie sees no appeal at all in the toy department so she ruthlessly cuts through it. But one of the designed rooms catches her interest so she takes a detour. Ah loft bed! She loves to be "up" and since she said the word we happily oblige, shoes on feet and sausage in hand, no less. Of course if Sophie likes something, she really likes it and sees no reason to leave. Ever. But eventually we are able to direct her attention to the other bed where she rolls around and flops from head to foot for a good 15 minutes. It is at this point that a different family enters our room with a little boy barely older than Sophie. They come, they look. The boy asks some very eloquent, proper-sentence questions which are ignored by his parents because I'm sure he talks that way all the time and there is no reason whatsoever to make a fuss over it. And they leave. We of course still have several minutes of flopping on the bed before we are done with that room.

At that point though we were still able to "shelf autism" by putting her in the shopping cart and finishing our trip uninterrupted. She generally enjoys riding in carts and strollers and was a charming little gal for the reminder of the excursion. I did have the "what will happen when she's too old for the cart" thought. Or when she's too heavy for me to carry her?

And I guess that's what I mean by fluid acceptance. Sometimes we enjoy her for the quirky but extremely lovable girl that she is. Sometimes she seems to "pass" and we get a little reprieve from thinking about autism. And sometimes she draws attention and looks and we are learning to deal with that too. But like with the bad knee, sometimes the sudden pain makes us gasp.


Edit (May, 2014). This post was written less than six months after Sophie received her diagnosis. We were still making sense of our new reality and sorting our feelings about autism. I want to clarify that Sophie's autism is no longer like a "bad knee" in terms of pain. We have worked through those feelings and have moved on to accepting Sophie exactly how she is. I am in the process of deciding whether this post still has a place on this blog, however I tend to think that it was an honest reflection of our feelings at that time and as such should be kept, with this disclaimer. If you have read it, please take the time to read the posts I link to below as they illustrate how our feelings have evolved since then.





Our family- the formal introduction

When I started this blog my intent was to focus on Sophie and autism. The blog was supposed to chronicle our journey and hopefully build a community while preserving the privacy of the other members of my family. I'm a fiercely private person and just wasn't comfortable with putting our whole family out on display.

However, it is now becoming blatantly obvious to me that focusing on Sophie while carefully editing out the rest of the family paints an incomplete picture of her life. She is not a disembodied little person living alone or just with her mother. She is the third out of four children in a busy, loving, rambunctious family, which even includes a dog. I'm starting to realize that avoiding to mention or post pictures of the rest of us is distorting her reality.

We are all on the journey together. Our daily life, interactions, squabbles and giggles help to shape Sophie's perception of the world. So let's take a minute to introduce the full clan, shall we?

Me (the mommy)

These next 4 photos were taken at a family camping trip in lovely Bruce Peninsula, Ontario

I have been a full-time stay at home mom for almost 10 years (wow). I had my oldest son younger than I anticipated, just a few days after my 23rd birthday and just a couple weeks after completing a print journalism program at college. While financially it was a sacrifice, I don't think I will ever do anything nearly as fulfilling as parenting my children every day. They are my teachers- just when I think I know it all, life hands me a slice of humble pie. When not mothering (when is that?) I love to read, write and organize (really).

The daddy

Sophie in her pre-autism days

We met in high school although we didn't hit it off right away. He is the yang to my yin, the total opposite of me in every way. Creative and passionate he infuses our lives with a playful energy and adds spontaneity and child-like exuberance (which clashes with my stoicism many a time). He is a furniture maker and woodworker, who loves to improve our home with his creations. However, most importantly we are a true team when it comes to parenting and I couldn't imagine being in this without him.

The big brother (9.5)

Our oldest boy is creative, smart, thoughtful... With a side of firey temper. He is probably most like me out of all the kids (minus the temper of course, ahem). He loves science-fiction and fantasy, he reads till we yell at him to stop and is quite the history fan too. He was also our introduction into sensory processing difficulties and other quirky behaviour, which proved invaluable by the time we had Sophie. We enjoy his maturity, his sharp wit and our nightly Star Trek - the next generation Netflix dates after the other kids go to bed.

The big sister (almost 7)

My big girl is like jr. Mommy to the babies. She is all heart and love, with a dash of girly silliness sprinkled in. She lives for play dates, parties and gymnastics, but can always be counted on to lend a hand with housework or keep an eye on the little ones. She seems to intuitively understand what Sophie needs and patiently nurtures her and rejoices with me at her every accomplishment, no matter how small. Often she decides she will sleep with Sophie in the bottom bunk of their bed and insists that Sophie's tossing and night waking doesn't bother her one bit. She is a special one, my big girl.

The baby (6 months)

Our little man. He sure picked a time to be born. I became pregnant while Sophie was still not autistic (in our minds anyway) and her condition became gradually apparent to me as the pregnancy went on. She was formally diagnosed a month after his birth. So the timing sucked, but he makes up for it in charm :) Little man is spunky, loud and relentless in his pursuit of Sophie's attention. And she accepted him; she shares my lap with him, will snuggle with me over his body (a sight to behold), looks genuinely concerned when he's upset and tries to comfort him by rubbing his face. I think his role will be that of a guide- taking Sophie through the missed milestones, the lost skills, one more time along with him. I look forward to seeing how their bond will develop, if they will be as close as my older two are.

And of course, Mimi the dog (4 years)

She's not always so glamorous

Oh Mimi. Our crazy little ball of fluff, who thinks it's her job to protect our family from harm (harm apparently often takes the form of UPS men and landlords), who is certain that all guests to our home are coming to see her particularly and who cannot imagine why she should sleep anywhere but snuggled against the youngest member of the family (or on a pile of clean laundry, that works well too). As exasperated as she makes us (the parents) sometimes, we love her for her loyalty and patience with the kids, even the ones who show their excitement by pulling fur and squealing into ears.

And now you have the complete picture of Sophie's life. While the focus of this blog will always be our journey through autism, any and all of the above mentioned people might make guest appearances to clarify the context of the situation. Hope you enjoyed this glimpse into our family!




PECS boards

I thought I'd update on the communication boards since I mentioned that I'd be making one. Well I did make, two actually, for the kitchen and living room. I purchased really cute (and cheap) white boards with a fancy border at a big-chain discount store (Dollarama for the Canadians ;) the nice thing about them is that I can use the marker to write things on it. For now I stuck with "I want". I put Velcro strips on the boards and Velcro dots on the cards and ta-da!

Living room

So I'm keeping it simple, only few choices all of which are highly desirable for Sophie (these are a few of her favorite things...). I know I mentioned I wanted to do PECS "right" but we are doing a more organic, "whatever works" approach. The amazing thing is that Sophie is incredibly intrigued by the cards. Perhaps because they all represent things she loves? Last night when I was still putting the Velcro dots on she already grabbed the "orange" card and stuffed into my hand with a no-nonsense, "get me some of them oranges" expression on her face.

I hope these cards will alleviate some of her frustration. She seems to be happy to have them anyway, she keeps looking at them with her head cocked to one side. When I put the Thomas card up before putting on her show, she beamed. So now I'm thinking about a visual schedule maybe. It helps that we are back in our routine, the older kids at school and us going to play group in the mornings.

What still concerns me is that while the cards are great for communicating her wants at home, she is showing the desire to express more abstract ideas too. Today we met our OT at the play group and she noticed Sophie's constant soundless speaking and facial imitation too. She wanted to tell me things, but again I was at a loss. She was happy to be back, I could tell that. But was she telling me this? Asking to follow? Suggesting a game? Needing help? I don't know. Oh, I hope she finds her voice soon! I'm so looking forward to getting to know the person she is becoming.

Choices, choices




Communication frustration

Lately, Sophie has been showing some real desire to communicate. She seeks us out many times a day and moves her mouth soundlessly as if speaking while looking intently into our eyes. It's as if she's compelling us to understand. Of course the frustrating part is that we don't understand, or we are not certain if we understand correctly. We do our best to guess what she wants, but since she has been inside her own head for so long we don't really know her I'm afraid. Oh, we know she loves Thomas and fruit but she's been showing us there is way more to her than that, we are barely skimming the surface.

So the typical scenario goes like this:

Sophie comes into the kitchen, grabs my sleeve and starts "speaking". I try to gauge, by the slightest nuance of body language or where her eyes seem to be glancing what she wants to say. I ask, I prompt, but I'm at a loss. She gets increasingly more frustrated. I can't stand it and give her something I know she will like- her sippy cup, a hug, or a snack. She accepts my offering and waddles off pacified for now. I feel I missed the point.

I'm sure some (if not most) of the time we are probably more or less correct in our assumptions. If she comes into the kitchen she is probably hungry. But she could also be lonely. Or maybe too hot/cold. Or want to go pee (whole different post but it's also a major communication frustration). Or maybe she did pee and wants to be changed. Or maybe, just maybe I'm way underestimating her and she had a completely spontaneous thought which she wanted to share with me. And there I go cutting up some grapes and looking at her hopefully.

These are thoughts that are driving me crazy lately. Especially since she has been getting more frustrated in the recent weeks. On one hand I figure frustration is a good sign. After all, you need to have some ideas in your head to have the ability to be frustrated, I think. Before, Sophie was so passive she never got frustrated. She was catatonic almost. So for me, her getting frustrated is a sign of some developmental progress. On the other hand frustration is, well... frustrating. Since we don't really know the scope of her cognitive abilities, we are fumbling in the dark as to the range of things she could be frustrated about - is it merely physiological needs? Or is it more or less developmentally- appropriate toddler behaviour? Or is she so self-aware that she realizes that we are all communicating using language while she cannot? When we are talking to her we always try to get down to her level and speak to her eye-to-eye. It was puzzling to me why she would always try to put her fingers in our mouths like she was looking for something. Recently, my husband said he thinks she is trying to figure out where the voice is coming from. Which makes sense to me but I don't know how to help her.

From autismhelper.com

We have decided to start using the Picture Exchange Communication System (PECS) with her. Our OT was kind enough to print out some cards of highly motivating objects (mostly food-related :). We have been showing her the pictures and getting her to make choices and she seems to catch on fast. However, I'm the kind of person that likes to do things "the right way". So I've been learning about PECS so that we can teach her the way the system is designed and not end up confusing her. This website was particularly helpful as it laid down the basics organized in a sequential manner. I thought we had a bit of time to wrap our minds around this system, but given Sophie's urgency to communicate I think there is no time to waste at this point. In the next couple days I will be making a couple communication "wants" boards like in the picture. One will hang in the kitchen and will be for food and drink items and one will be in the living room and will have couple of the activities she likes to do everyday. And then we will see how it goes from there I guess.






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