Robot Tea

I’m feeling sorry for myself today, so please bear with me.

Some days are brilliant, shiny. Some days I can convince myself that Noel is perfect – adjusted, happy, well behaved perfection. On those days, he does not have as many struggles with switches in routines, he doesn’t have an emotional meltdown over something like the shape one cuts his toast into, he is happy and sweet and it’s just a good day. And so, some days, I feel like we could absolutely get along fine, without aides and therapy and assistance.

This was not one of those days.

Last week, we decided to switch Noel from pullups to underwear, because at school he’s been staying clean and dry all day long. So we had Noel pick a date, and we had a party, complete with cake and offkey singing ‘Happy No Diaper Day to you! Happy No Diaper Day to you!’. Unlike a previous attempt at cold turkey, in which Noel gleefully peed all over my carpet several times, it’s been going well on the peeing front. He eagerly lets us know, dashes off, gets the business done. The other half of the equation is not going as well. Big boy underwear casualties? I think we’re at five pair.

But we’d been staying at home, close to the bathroom, and so it was a gross not so big deal. But today I we headed over to Noel’s old preschool for an open house.

Noel’s preschool last year was parented – Holland and I attended with him, the classes were a touch younger, and it was the only option we had since Noel is 19 days off the cutoff date for age requirements. Since he was nowhere near toilet ready, it didn’t matter, and I knew that it would be the best option we had. Holland was tiny when we started – a mere 3 weeks old. I was fresh off my c-section, and so off we went.

Though we’d had our suspicions about Noel’s behaviour prior to this (at about 18 months old we had an Early Intervention evaluation done, and were basically told he was sensitive, but fine), attending preschool really cemented it for me. The teacher reassured me – he will get better at sitting at circle time in a month or two. He’ll get a feel for the routine. He’ll share better. He’ll socialize better. It will get better.

And it didn’t. School was pretty much always an unpleasant experience for me – two hours I spent juggling Holland, breastfeeding, wearing her, while I broke up fights, physically restrained Noel for circle time, and was generally discouraged by how much he didn’t improve.

I don’t know why I thought today might be better. Maybe because there wouldn’t be a circle time at the open house. Noel would be free to play for the entire time we were there. And Holland is older, and much more mobile, so she could play, too, and maybe I could chat with an adult or two for a change.

But no. Today was more of the same. Noel and another boy chased each other in circles, squealing, running, narrowly avoiding the crawling babies on the floor, falling. I stopped Noel multiple times and asked him to stop. Noel’s former teacher asked him to stop. One of the owners asked him to stop. And still it continued. It did not help that the boy who Noel was chasing had a father who was more interested in chatting with another dad than telling his son to stop being wild – every time I’d redirect Noel to a different activity, the boy would be back, goading him to chase him, taking the toy I’d offered away, and Noel was caught back up in the frenzy.

And then he pooped in his undies. Okay, no big deal. I took him into the bathroom, got him cleaned up and changed (while holding Holland off with one hand to keep her from the ever intriguing toilet water) and told him it was just about time to leave.

Once in the car, settled happily with a brownie, he started to cry. He insisted we were driving the wrong way home, because the freeway we were on was just for leaving his new school, not his old school. Then he was crying because he wanted ice cream. Then because he wanted macaroni and cheese, but I could not boil it, nevermind that we have no mac n cheese in the house at all. And so on and so forth.

The day continued like that – tears and screams and incoherent grunting because I called something by the wrong name, because we mistakenly said we’d be riding in one vehicle and took another, and and and.

So the kids went to Grandma and Poppa’s for supper, and we went out for a meal that didn’t involve Holland screeching because she wants to use a fork but has no idea how, and Noel lying in the middle of the table because.. well because it’s what he does.

I’m tired. I’m frustrated. And I’m sad. Because some days I can see hope in the distance, and some days, today, I cannot. Trying to move forward with the FSCD applications, wondering how the school funding works, and all the while feeling like we’re treading desperately just to stay afloat. All in all, today was a crap day. With luck, tomorrow will be better.

Today, at long last, we received our offical report, with the conclusion and diagnosis.

Somehow, seeing it on paper has made me at once melancholy and relieved. It means so much, so many things, and so little, all at once. It has spurred me into action, now there are appointments to make and paperwork to fill out and skills to learn, and in turn, teach them to Noel.

I had been harbouring not so secret hope that the report would come back – Oops! Our bad! He’s totally normal. He’ll grow out of it. Four years old will be better. It was a ridiculous thing to hope for, but one that some tiny part of me was clinging to desperately.

For anyone who hasn’t received a pyschoeducational assessment of their child, it basically is one big package of suck. There is little included about the amazing things about your baby, but instead the focus is on the deficits your child displays that will make them eligible for funding. It hurts to read, and it sort of makes the little mom voice inside roar ‘But he has so many GREAT things about him! He’s awesome! Really!’.

Waiting for the report was like standing at the bus stop, for a route you’ve never taken before. Now we’ve climbed on the bus and have to see where it takes us. Deep breath. Here we go.

To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other’s hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time. – Clara Ortega

Holland is the baby sister in our household. She adores her brother. She will follow him anywhere. His laughter makes her laugh, that sweet baby laugh that’s like hiccups and squeals rolled into one. Though she’s often on the receiving end of careless shoves, snatched away toys and other injustices of childhood, she endures, and adores, unfailingly.

My pregnancy with Holland was less than simple. In my first trimester, we found out I was lacking a protein that, when absent, is associated with Down Syndrome. I ended up having further testing, in the form of a CVS to rule out the possibility. In the agonizing two weeks that we spent waiting for the results, while in lab somewhere, Holland’s chromosomes were carefully accounted for, we found ourselves wondering what we might do. Would we terminate? Would we go forward, hoping for a high functioning child? What quality of life would our child have? What would it mean, what would it look like for our family?

And you know, we never really came to a decision, but I know that Noel weighed heavily in those discussions. What did it mean for him? Our choice to have a second baby was not one we came by easily. Noel is, and always has been, a high needs child. He requires attention – when he doesn’t get it, he demands it, usually noisily. As many people have said to us ‘If our second had been our first, we never would have had a second’, we were the opposite. Our first was that ‘difficult’ child, and our second, we hoped, was going to be different. Easygoing, laidback, sleeping through the night from day 1. (Ha!)

Holland is pretty laidback. She’s an observer, though when she wants attention, she, like her brother, can insist on it with all her vocal power. She is cautious around outsiders, and she really loves to snuggle. Her hair is blonde, and a wild mess, really more of a baby mullet than anything else. And when I watch them, I try to figure out what it will be like for them as siblings, growing older. Kyle imagines she will protect him from bulllies, and I think he’s right. She’ll be his one built in friend, where making friends might be a struggle for Noel.

I find myself wondering if we would have had a second child, if our diagnosis had come earlier (though from what I understand of Asperger’s, that’s pretty unheard of. The onset of symptoms is later than in Autism, closer to three years of age.) We had carefully considered the implications for Noel if he was to have a sibling with Down Syndrome, and similarly, I think we would have needed to consider the implications for Holland to have a sibling with Asperger’s. At the end of the day, when our nerves are raw from dealing with both children all day, from dragging Noel back from darting out into traffic, from asking him not to push her, from asking her to leave him alone with his toys, I feel bad for her, because we snap more easily.

This post feels like a confession – Noel is hard, hard work. He is far more difficult than she is. When I am home with just her on his school days, life is much simpler. And because I lack a frame of reference, I don’t know if that’s normal for all parents of two, or how extreme the difference is.

I do know that now I have two beautiful children, who I wouldn’t trade for the world. And I guess that’s what it all comes down to.

I came across this article via Stumbleupon this evening, and found it to be a very interesting read.

“The New Wave of Autism Rights” highlight three major warring teams in the Autism world – those who believe autism is caused by vaccines, those who believe autism is genetics and those who believe that autism is ‘neurodiversity’ that should be embraced, not cured or eradicated.

I know where I don’t sit – I do not believe that Noel’s Asperger’s was caused by vaccines. While my position could change given new, solid information, it’s just not something I really consider. When it does pop into my head – ‘Is it because I vaccinated him?’ it is usually lumped with other thoughts I label “irrational” – ‘Is it because I had an epidural/emergency c-section/don’t feed him enough organic food/breastfed him for too long/not long enough?’ and so on and so on.

Genetics I’m not sure of – sure, I can see these symptoms in myself and in Kyle, but at what point do personality traits become disabling? Obviously, for us, they were mild enough or managed well enough that we got by just fine. Noel is not getting by just fine.

But the ideas about neurodiversity I find so interesting. Is it wrong to hope for a magic bullet that cures Noel and renders him “normal”? Does it deny who he is to want it for him? I don’t think so because I don’t wish to change Noel so much as I wish to lessen the struggles Noel will inevitably face.

Right now, Noel displays behaviours that place him at risk for injury, or even death. He will dart into the street or through a parking lot without a second thought. He is so oblivious to us at times that we wonder how long it would take him to notice he was separated from us in a public situation. We keep a secondary, high lock on our front door to prevent Noel from opening the door to a stranger, or worse, wandering out when we’re not paying attention.

Why keep those? Those behaviours are cute and quirky – they’re dangerous. They place him at risk. So of course, I want rid of those. Does that deny who he is? I don’t think so.

Noel is too young at this point to know what his strengths will be. But I think that how we react to him now, how we approach parenting him, the assistance we seek out, the therapies we use, will affect those strengths completely. If we just decide to embrace everything, the negative, the positive, the in between, will he find his way through? Or will he just be a 15 year old who is not toilet trained, who talks to himself, wanders away, and flings himself, physically at walls, furniture and other people?

So I think for now, while the idea of neurodiversity is pretty, it’s not real. Not to us, yet, anyways. Yes, this diagnosis is a positive thing, because we can help Noel to adjust to a world that must seem hostile to him, But we still wouldn’t have chosen it for him. Not in a million years.

I think the hardest part of adjusting to the diagnosis is in the every day things. The way the possibilities suddenly bubble up to the surface, things I hadn’t yet considered.

For example, at the support meeting we attended, the Registered Disability Savings Plan was mentioned.

It had never ocurred to me, of course, that maybe Noel would need care after we are gone. That maybe the RESP he’s had since birth will not be used. I catch myself, and remind myself that thinking ahead to Noel’s retirement years is maybe a little excessive. But again, it’s the things I haven’t thought about yet that catch me with a sharp jab in the side.

And the permanence. Noel will not grow out of Asperger’s. He will not one day be cured. He will always be an ‘Aspie’. The severity, his coping skills, how affected he is from day to day, that might change. But it’s forever.

And part of me is resentful. Resentful of the families for whom this is never a consideration. How unfair it is, to win this lottery. Part of me knows that Noel is a brilliant light in my life that I would never ever trade. But part of me is stomping her feet and throwing a tantrum. I don’t want to learn new ways to parent! I don’t want to learn how to help him cope with his emotional meltdowns! I don’t want to worry about him every time I turn my attention elsewhere! I want normalcy.

But then again, what is that? Surely all parents have some degree of struggle that they would rather do without. The grass is always greener, and it’s not about who’s got it worse.

Noel’s second day at school was a smashing success. When I dropped him off in the morning, he ran eagerly down the hallway, into the classroom, and hugged his teachers, who gushed about how affectionate he is. When we picked him up, we were a few moments late, and he was standing staring at the door with tears starting to well in his eyes. When I asked him what was wrong, he told me we were a little late, and he thought we might not be coming. He hugged my leg and patted Holland’s bare foot.

The way he makes my heart swell cannot truly be put into words.

Through learning we re-create ourselves. Through learning we become able to do something we were never able to do. -Peter Senge

Yesterday was a day of new beginnings and opening our minds to learning.

Noel started school yesterday, at the school we chose afer a grueling marathon of presentation workshops, open houses and info nights at various schools around Calgary. The school we picked we love. It seemed to speak to the spirit in Noel – freedom to move, to choose how he learns, to be engaged in what he loves as a way of sneaking in some real life knowledge.

I was, understandably, racked with fear. I worried that the day would go poorly, envisioning his teacher pulling out her hair, at wits end, him sequestered in a corner for the entire day with no one to speak to. That the moment he walked through the door he would receive his label, and that label would be ‘problem’. Big red letters on his forehead, a brand to warn others as he approached. I worried that I hadn’t packed him enough lunch, that he wouldn’t be able to get the straw into his juice box, or open the plastic wrapper on his cheese. I worried that he would miss us, or worse, that he wouldn’t.

Thankfully, his first day went wonderfully, save for a trip to ‘homebase’ (the school’s term for Time Out) when he didn’t respond to the teacher after she called his name multiple times. On the way home he eagerly told me about his day, and then he got that glazed over look that tired, happy people sometimes have.

When I picked him up, I spoke with Ms. R, who told me about his day, and it was then that I revealed to her the diagnosis. Upon meeting her last week, I had been unable to say… anything, really. I was struck dumb, floundering, and unsure of how one goes about saying something like that. Inserting ‘My son has Asperger’s’ into the conversation, what does that follow? ‘Some weather, eh? By the way, Noel has a neurological difference.’ She seemed almost relieved when I did tell her, which sometimes is how I feel when I think about it. I could tell she was happy to learn that it wasn’t just her, her classroom, her teaching. And I’m sometimes relieved to know that it isn’t just me, my parenting, my love, my failings (however abstract or illogical they may be)

In the evening, Kyle and I attended our first support meeting for ASD at the Autism Calgary Association. It was something we very much needed, a table surrounded by people who were struggling in similar ways that we are, who are further up the path or nearing the end and who can tell us – yes, we’ve been there, yes it’s dark and scary right now, yes, it will get better. It meant the world to us that we had the opportunity to sit down and discuss our son, to talk about his quirks and to hear about the quirks of others, and see the similarities, and be amazed by the differences. Truly, I am stunned at how much variety there is within the Spectrum, although I guess that’s precisely why they call it that.

So we took in all sorts of information – about the Family Support for Children with Disabilities Funding, about service dogs, about ways we can more effectively interact with Noel, validate his experience and help him to see that we are here, we are listening, and we do care. Methods for dealing with the schoool, and the people in our lives who are reluctant, who just can’t see what we see, or who don’t want to. Two full hours of discussion without judgement, without shame, without fear. And it was pretty damn nice.

I’m sure every mother has them, while she is swollen big with a baby, a round bump of hope and longing and mystery that occassionally delivers sharp kicks into her ribs. Expectations. Pregnancy is, after all, ‘expecting’.

A baby. A lifetime. A certain soft baby smell, that downy soft hair, the snuggles. A picture perfect family on a walk on a fall evening, a bouncing baby in the stroller, holding hands. So many years stretched out ahead of them with only the best and brightest and greatest of possibilites.

I had them. When I was pregnant with my son, we carefully considered the weight of his name. How important it would be for him to have a strong name, a name that evoked intelligence and gentleness and a great sense of humour.

So in my mind, there he was. A warm, snuggly ball of joy, who would talk early and achieve ahead of his time, and only impress us. And there I was – an Earth mother, in the grass, barefoot, babe to breast, making cookies with only the best organic ingredients. Mashing up fresh baby food, sleeping with his small self pressed to my side, holding him at all times and answering every whim. For me, motherhood was this glowing, golden time. It was going to be perfection.

The reality was different. On January 19th, 2006, after a long labour and an emergency c-section, Noel entered the world screaming at 7:26 p.m. He was perfect and beautiful – his head round due to never engaging in my pelvis at all, his skin olive and his hair thick and dark. I didn’t get to hold him for some time after the birth, several hours, while I trembled violently, while the nurse pressed ice cubes to my skin, slowly descending to follow the feeling as it returned from wherever it goes when one has an epidural.

When I did finally get him, he was such a foreign creature. I could not connect this Noel with the baby I had carried and planned for. He was such a strong force, he defied all my previous expectations, even in his first hours of life, with his eyes squeezed tight against the invading light and his mouth searching for milk. He stubbornly insisted that any plans I’d had, I should discard.

And so it was that we brought him home, and he turned everything on it’s ear. Of course, all babies do, and I shouldn’t think we were anything special. But I had so wholly bought into a different picture of what it would be like that when the reality set in I was left stunned. The January nights were interminably long. Nursing was isolating. And he cried. He cried for hours. All the time. A wrenching scream that would cause my breasts to tingle and my heart to fall.

Yes, he was some of the other things I had considered – he smelled amazing, his hair soft as silk. He was the perfect weight on my chest, where he usually slept. He is whipsmart and stunningly gorgeous. He experiences joy with a passion that we should all be so lucky to feel.

However, over the last three and a half years, we also noticed that something was different about him. That whatever the beat was in his head, it was different from what everyone else was hearing. Noel is extraordinary, in the true sense of the word. He is stubborn and loud and he throws himself, literally, at everything.

As we have moved through different channels, trying to help Noel better function in his world, we finally met with the right psychologist, who had a word for Noel: Asperger’s.

So yes, my expectations were one thing. The reality is very much another. The true meaning of this diagnosis is still sinking in, settling into my bones and so I type the letters into Google and then sit staring at the screen. Skim the paragraphs and just can’t process. I am utterly overwhelmed. Thoughts race – will he make friends? Marry? Will he always have the epic emotional meltdowns that can bring our entire household to its knees? Will he succeed in school? Will he meet the plans I made for him in my head?

As of this moment, I still am unsure. I am not even certain of hope. So this blog.. will be us, moving through this, feeling our way around in the dark. I know that eventually we’ll come out on the other side, stronger, better, enabled. But for now, I feel absolutely blind.

(As a side note, today is our daughter’s birthday. Happy 1st birthday Holland!)