Absence

Abby's epilepsy has been relatively stable for a number of years. The last time the apple cart was upset in a major way was about a year and a half ago, when the switched generics on us for one of the anti-seizure meds. 

In that particular case, the new generic was absorbed at almost double the rate of the old generic, making her trough level skyrocket to over 60. It should be below 30. She had numerous seizures as a result, as well as a resurgence of migraines and facial tics, both of which hadn't bothered her in well over a year at that point. 

Since then, we seem to have settled into a relatively livable pattern of one complex-partial seizure about every three months. And actually, she hadn't had a seizure at all, as far as we know (always tricky to know what's going on when communication is such an issue) in about six months. 

Today, the phone rang. 

 

I always loathe when my phone rings, and I see on my call display "School Division". Something is usually wrong, although there are always exceptions. 

Today wasn't the exception. 

The teacher explained to me that Abby had an absence seizure. We haven't had an absence seizure in a looooong time... probably since she was about 16 or 17 months old and started transitioning from the infantile spasms to the complex partials. I asked some questions, and from what I could remember is sure sounded like an absence seizure, albeit a long one at 45 seconds. 

Second-guessing myself, I check epilepsy.com  just to make sure I was remembering the ins-and-outs of seizure types correctly. Then I called the school back and asked a bunch more questions. 

Was she responsive? No

Did she chew, which she typically did for complex partials? No

Did she come out of it gradually or abruptly? Abruptly

Did she seem aware of what just happened? No

Walked like a duck, talked like a duck.... 

 
 I didn't know what it meant. Do seizure types change? 

The answer.... dah dah dah dah!... is YES!

I called Dr. E. I love that man. I'll be lost when he retires in the next couple of years. Anyway, he explained that it's very common that as these kids approach puberty that the changing hormones can dramatically alter both seizure patterns and types. It can be rough. His advice was just to wait, watch and keep track of things. 

 See, now here I've been worried about the puberty and Autism thing. You know, teaching her to wear a bra, menstruation, the mood swings, all that fun stuff. 

That, somehow, suddenly seems simply compared to the prospect of managing an ever-changing epilepsy through the teen years.

One!

I'm a few days late on this post, but I don't think anyone minds. 


Baby turned one! 

Oops. Forgot my pants!

I don't think I've formally introduced her. Baby Christina was born last September and just turned one! She's quite the little peanut, and has been walking for nearly 5 weeks already, months earlier than anyone else. (She's got to keep up to everyone, 'ya know!). 

It's been a lovely fall so far here. I turned the A/C on this past Saturday (it was nearly 30 degrees!) but it was... chilly... this morning. First frost. Alas, I refuse to turn on the heat in September, and we buckled down and put on sweaters. 

We live on a lovely cul-de-sac - it's idyllic really, and perfect for our family - and while the leaves are turning the flowers are still looking lovely.

The tree in the circle. In case you were wondering,
it's our meeting place for our fire escape plan. 

Aren't they still lovely so late in the year? And no rabbits jumped out
and scared me, unlike last time I tried to take a picture of them. 

We were scheduled to take a nature walk today to record more of the changing season in our journals, but plans got kiboshed by erratic napping schedules. However, a frog trapped in the window well provided ample fodder for the journals in the end. 

Getting down the business. Ignore the dumpster.
We're renovating.

The frog. 

Hard at work. 

Drawing. 

I'm pleased to report that the frog was subsequently caught (along with a companion - we never realized there was a second frog until Daddy came home and captured them for us) and released into the back yard in a more suitable habitat. After my husband brought the darn things in the house to show me. 

Why are there frogs in the kitchen?

*Sigh* 

Men. 

Abby has settled into school finally. It was a bit rough the first few weeks, as she has new EA's this year. Her OCD has been very bad, even with bumping up her medication that helps with that. And before you ask, yes the medication is helping because we tried taking her off of it after Christmas last year, thinking it wasn't helping. The result was not pretty.

Despite all she's been through, she still always smiles for the camera!

She loves to swim. The deep pressure of the water helps with her sensory needs. Right now, we have her in a one-on-one swim class for special needs kids at our local Y, plus she swims two afternoons a week at school. We also go to the Y for public swimming whenever our schedule allows us. Our Y membership has been a great asset, not only with Abby but all the kids. In the long, dark and cold days of a prairie winter, it's good to have someplace to go that doesn't involve snowsuits! 

School

 I think this is officially my first homeschooling post. 

Homeschooling is something that has long interested me. I read back on old posts like this one, and I can see how my thinking has evolved since then, especially on the topic of socialization. Alas, that's another post.  I still wish I could keep Abby home with us, and teach her myself. However, her challenges are great and I need the school resources to address them. 

When I met my first homeschooler, the big girls were very young. Rachael was maybe a few months old at the time. I was intrigued, but it wasn't something I had seriously considered up to that point. I filed it away in the back of my mind, never really thinking that I would pursue it. 

But then something magical happened. Abby started kindergarten. 

Abby's first day of kindergarten

I seems like an almost terrible thing to say, but our family is almost... normal... when she's away at school. Suddenly, once she started all-day-every-day kindergarten, possibilities started opening up. 

Homeschooling my other children suddenly became an option. And I suddenly found I wanted those precious hours of normalcy with my other children when Abby was away.

I wanted them home.  

From Easter. Everyone home. 

Rachael went to nursery school that year Abby was in kinder, and then I never re-registered her for the second year. I didn't register her for kinder either. Technically, I didn't have to register her for anything, public school or homeschool, until this year, but I registered her for homeschooling last year, grade 1. "Register" isn't even the correct term - here we just have to notify the Department of Education of our intent to homeschool, and fill out two progress reports per school year. 

Easy-peasy. 

So now, as Abby heads into grade 4 (!) at our local public school, in her very awesome Life Skills program, Rachael is heading into grade 2. Joseph is, theoretically, doing pre-K, although I'm not sure how much he's going to sit for bookwork. I've decided to have him "do science" with Rachael, as I think he would like the topics we're covering, and the rest... well, he's got lots of time. Reading and math will wait until he's ready. 

Cause we're coving stuff like simple machines. He'll love it. 

We're using CHC this year, with a bit of infilling mostly from Catholic Mosaic and trying to embrace some project-based stuff. We've been using a mix of different things over the past few years, trying out Mater Amabilis and Seton. I love the idea of a Charlotte Mason-style curriculum, but with MA I had to do too much of the planning. Seton was just too intense. 

CHC seems to be a happy medium. Rachael doesn't have the patience to kill-and-drill, and I would rather find myself in a position where I have to seek out extra work instead of feeling obligated to finish the whole. darn. book. That's stress I don't need. 

So this year is going to look something like this: 

with a bit of this thrown in for good measure: 

Planing her model of a playground

Lining things up

Needs more glue

And more glue... 

In the wake of making something.... 

Boredom

This is what Abby did the other day, in frustration and boredom at the computer getting turned off at bedtime:

Ooops. 

The Desert

Picking up the blog has been an interesting journey for me. For starters, at one point, I felt the need to separate out my faith from my "other stuff", something which I now know is, at best short-sighted, and at worst self-deceiving. I cannot divorce my Catholicism from the rest of me, any more than I can remove the fact that I am a woman, or a mother, or a musician, or any other part if me. I am a whole, and ignoring part of it is akin to removing a limb.

It has been in rereading old entries such as this one that I realize the spiritual desert I am currently in.  The passage that really struck me was

I contemplated, looking around at the interior of the sanctuary, how connected we are, as Catholics, to the past. The continuity is startling to me at times. I am reminded by something said by the then-Monseigneur Fulton Sheen in a video of the Tridentine Mass: nothing in the Church is thrown away. Everything is build upon, preserved. 
It struck me very much during the singing of the Pange Lingua during the procession: here we are, centuries upon centuries later, singing the same words, the same tune, that our Catholic forbearers sang (it was penned by St. Thomas Aquinas from the 13th century). Many of the words we speak (the Kyrie, for example) date from the day of the early Church. Even our creed in some form or another dates from at least the 4th century. Gazing around the church, you can see the symbols and the elements that have remained with us for 2000 years... Even with the advent of Vatican II during the 1960's, the Catholicity of the Church is still very much intact.

I'm trying desperately to remember what that sense of peace and security felt like. I'm trying to remember how I felt so connected to the past, because I don't feel like that anymore. 

What changed? 

Well, I think things started to change for me when something oh-so-common in Catholic Churches occurred - we got a new priest. 

Movement of diocesan clergy is commonplace in most parishes, most staying for four to six years before moving somewhere else. I know there's a philosophy/social theory behind that, less years than that it's too hard to get things done but more years than that it becomes overwhelming, something like that. Father Y came to us shortly after Abby was born, in 2006, and left in 2012, moved to a different parish within the diocese. 

I loved Father Y. Under him, I felt a comfortable bridging between things that were old (i.e. tradition) and things that were new (the New Mass). Under him, there was a happy medium, those things coexisted relatively well. Under him, there were no girl altar servers, and yet there were always servers for every Mass. There was incense and bells, even as Mass was said versus populum as we sang some bad Dan Schutte or Carey Landry tune, so favoured by those of a certain age bracket. He had beautiful vestments, and not that polyester crap you see too often these days. He talked about things like Natural Family Planning and other tough topics. He was heavily invested in forming vocations, taking several young men under his wing including one that was just ordained this past summer. He took a special interest in helping a few select individuals, individuals mostly written off by the community, something I think largely influenced by his career pre-priesthood.

It was a comfortable place for me to be. When we talked about moving back to Winnipeg, neither me or my husband wanted to leave the parish. We had roots, dude. 

Now, I know not everyone loved Fr. Y like I did. People have criticized that he was not "good with youth", because he made the tough decision to cancel the unsustainable LifeTeen program (the volunteers had burnt out and attendance was dwindling, besides the fact the umbrella program for that was mired in controversy at the time) and he didn't allow girl altar servers. He was criticized for certain aspects of his spending on the restoration of the parish, splurging on some items (I feel that particular criticism has at least some merit). He was maybe not the most efficient or effective human resource manager, having numerous strong personalities in the office at that time needing leadership. 

But he was a good priest, and I was sure and happy in my faith. I had beautiful things on the outside, and they inspired beautiful things on my inside. 

Then we got a new priest. Now, I want to add that he was still a very good, faithful and holy priest - but he was fully invested in the New. There was no more incense (or at least, very rarely), there were polyester vestments, and homilies were more of the Church of Nice variety. He was "great with the youth" according to several parishioners, yet the remaining youth program was dissolved due to lack of kids? staff? (I'm not even sure at this point) and there often wasn't altar servers despite girls once more being allowed. He was beloved by those who loved the New, and regarded with suspicion by those of use who loved the Old. 

And then he got sick and had to leave. 

He left last Fall. I don't blame him, and I respect him tremendously for talking about his struggles and his determination to get well. I do not begrudge him in the least for that. But that set the stage for Father G. 

After Father Y left, I became increasingly interested in all things Trad. By Trad, I mean traditional Catholic. I had dabbled in it for several years at that point - Father Y facilitated TLM being said on occasion at our parish, usually on a Sunday afternoon, and I attended a few times. My curiousity initially was mostly academic. History fascinates me, and I found myself drawn to this archaic form of worship to understand where we came from. But once our parish became heavily invested in the New, I found myself asking lots of questions. Lots and lots of questions. Questions that had neither easy nor satisfying answers. 

In other words, Father G could not have re-entered my life at the worst time. 

I had met Father G some 15 years prior, before I really came back to the Church. I don't really want to go into the why and how right now, because that would be another long, drawn out, convoluted blog post. For our purposes, it suffices to say that Father G is beyond heavily invested in the New. 

He's for a New Order. 

There is, in both conservative Catholic and traditional Catholic circles, increasingly urgent whispers about the crisis in the Church. Conflict. Conspiracy. I never saw any of that first-hand, and didn't understand it. But sitting in the pews, listening to Father G say.... I can only describe them as outrageous... things every Sunday, and seeing all the nodding heads around me... 

I felt sick. 

Thankfully, Father G's stay was only temporary, for a season. We are now blessed with a more orthodox priest who will be (God-willing) remaining with us for several years. But the damage was done. I am shell-shocked. Empty. 

A husk. 

Gone is my prayer life. Gone is my ability to hear God's whisper in the stillness of my heart. Gone is my peace and assurance. Gone is my desire to even go through the motions. 

I am in the desert.

We are the hollow men
We are the stuffed men
Leaning together
Headpiece filled with straw. Alas!
Our dried voices, when
We whisper together
Are quiet and meaningless
As wind in dry grass
Or rats' feet over broken glass
In our dry cellar - T.S. Eliot

 

 

Superpowers

It started with a casual remark from Rachael. 

"You know, Mom," she said, "I wish I had Autism so I can have superpowers too."

Superpowers? Autism? 

Yep. 

Abby has, among other talents, bionic hearing. At least, it seems like she does. We live very close to the CP mainline, and freight trains rumble past our house a dozen or more times a day. Abby can hear them. I mean, we hear them too, but she hears them miles out, sometimes as much as five minutes before the rest of us can. She'll come up to you and say:

"Hear a train?" 

(Most of her statements are in the form of questions - echolalia I suppose from us asking her constant questions.)

To which we often will remark, "Do you hear a train? There's your superautismhearing again!" because 99% of the time, there will be train along shortly. 

Rachael has long been obsessed with superheros. For a year or more, she added to her prayers every night that God would make her a superhero when she grows up. So, not surprisingly, she might be a bit jealous that Abby has a "superpower". 

Too often, we read and hear about how our children on the Spectrum need to be "cured" or "fixed". I have questioned that philosophy for several years now. I questioned it waaaay back in ABA, and I question it still. Is my child actually broken? Or is she just differently-abled? 

Certainly, there are traits with Autism that make it difficult for her to function in our culture, but there are lots of things in our culture that I find dis-functional. Does Autism govern our family life? In many ways, it does. Will she need care for the rest of her life? Probably. 

But do all those things add up to a person being "broken"? After all, even Batman had a caregiver (Alfred), the Incredibles, well, they *were* a family of superheros, and guys like Peter Parker never seem to fit in anyway. Neither did the X-Men. And they were superheros. 

So what does that make Abby, with her superpowers?

Nourish

Hey.

Mea culpa, it's been forever, hasn't it? Life is busy with four kids (yes, I did say four!), homeschooling, and renovating.

I keep saying I'm going to start blogging again, and I never seem to get around to it.

Mea culpa.

Today I want to write about nourishment, which is fitting seeing how today's Gospel reading was this, from the book of John:

"I am the living bread that came down from heaven. Whoever eats of this bread will live for ever; and the bread that I will give for the life of the world is my flesh."

The Jews then disputed among themselves, saying, ‘How can this man give us his flesh to eat?’ So Jesus said to them, "Very truly, I tell you, unless you eat the flesh of the Son of Man and drink his blood, you have no life in you. Those who eat my flesh and drink my blood have eternal life, and I will raise them up on the last day; for my flesh is true food and my blood is true drink. Those who eat my flesh and drink my blood abide in me, and I in them. Just as the living Father sent me, and I live because of the Father, so whoever eats me will live because of me. This is the bread that came down from heaven, not like that which your ancestors ate, and they died. But the one who eats this bread will live for ever." (6:51-58)

We, as Catholics, find in this passage one of the scriptural justifications for ancient Tradition, the doctrine of Transubstantiation. It is the belief that the bread and wine actually turn into the Body and Blood of Christ. Whenever Jesus prefaced a passage with "Very truly, I tell you,", which is also sometimes translated as "Verrily, verrily, I say unto you", Jesus is speaking literally. He tells us that we must literally eat the flesh and drink the blood. 

Some people will argue that Jesus didn't mean literally, but was speaking figuratively. But if that was the case, why did that statement cause such an uproar among the other Jews? They thought he was speaking literally! Besides, if you look back on the history of the Jews, and what sacrifices entailed and what happened to them, it makes perfect sense that Jesus - the sacrifice once and for all - needs to be consumed, as all sacrifices must be in some fashion. 

But enough of the theology. This is about food. 

I've been feeling really awful lately. The baby, at 10.5 months, sleeps like a newborn. Meaning, she's up every 45 to 90 minutes through the night. Her waking wakes up Abby, who sometimes struggles to go back to sleep. That means lots of sleepless night for this Momma, and my zombie-like state during the day means some of the daily household stuff does by the wayside. 

Meal-planning was basically non-existent this past week, since getting back from our sorjourn to Winnipeg for a bit of holidays and to attend the funeral Mass for my husband's grandmother. And my body paid the price. 

I didn't realize it until yesterday, after eating an honest-to-goodness real meal cooked from real food, with lots of veggies and good quality protein just how low I had been feeling, and how much of it was from the junk and processed food I had been feeding it. The difference was remarkable. 

Eating badly seems to be a self-perpetuating thing. You eat badly because you're too tired to prepare something decent. You feel worse because you didn't eat well, which makes you too tired for the next meal. It keeps going. 

We had relaxed Abby's food restrictions somewhat in recent months, and it makes a tremendous difference. Gluten, as it turns out, is still mostly off-limits. We can let her have some here and there (helpful for things like birthday parties), but we pay for it the next day in her behaviour. She's a good eater, however, and I can't complain. She loves foods like egg whites, broccoli (she can eat a 5 lb bag by herself in the course of 3 days), turnips, roasted chicken, carrots, salad greens, baked potatoes etc. Stuff that most parents dream of their kids eating, nevermind kids on the spectrum. Many of her classmates seem to survive on processed foods, which can't be helping their behaviour. 

Joseph can't have too much processed stuff either, or he's positively vibrating. He seems to need a diet of fresh air, good activities to keep his mind and body busy, plenty of fruits and raw veggies, and strict restrictions on things like TV and computer time (AKA screen time), as they seem to effect her weirdly and needs to detox from them once you turn them off. 

We need to be conscious of what we choose to nourish ourselves with. I think eating fresh, whole food is more important that choosing non-GMO, although I will chose non-GMO when I can. I think nourishing our minds with good books, good projects, and lifelong learning is paramount. I think nourishing our hearts with the companionship of family and good friends helps us lead balanced lives. And nourishing our soul with Christ, both literally when we receive the most Holy Eucharist, and spirituality within our devotions and liturgical practices, strengthens us in our daily lives.