Friday, May 20, 2016

Sophie's last day of school

Today was Sophie's last day of school forever. She turns 22 on May 24th. She had a wonder full year at the Brookline High School Bridge program. I am thankful for everyone that was on Sophie's team and for the care and attention they lavished on her. She learned to fly and I learned that she could. Watch and enjoy.

Monday, April 25, 2016

No: I don't "believe" in play based programs

Because I am a Montessori teacher, I visit quite a few FB sites that deal with preschool learning and activities. I get lots of good ideas from them. . 

Lately, I have noticed quite a few postings about "Forest School". There are links and videos showing children roaming about in the woods, doing all kinds of fun stuff. Comments following these posts are usually enthusiastically positive and supportive of these environments, with lots of "wish my kids could go to one" and "yes!!! Too much pressure put on kids to learn academics these days!" I have also been asked very directly what I think of the Forest School and other play based schools in general. 

First off, I can say that there is a great deal of misunderstanding about the Forest School environments and how they operate. Opinions people are forming about them on this side of the pond are based on snapshots and film shorts. So, I can say quite confidently that what most people think Forest School is, it is not. For more real and complete information about Forest School, read HERE.

Linked to the fascination with Forest School, is the notion that children are not getting enough play time. This concern is expressed from people who call themselves experts in child development and also from teachers. There is great support for play based environments. There is concern that schools are pushing very young children to perform tasks that are geared toward success in state testing (and school reputations).

I will be the first to say that the typical school system as it is organized throughout a significant portion of the world is completely incompatible with actual child development. The best place to understand all of this is below.

All that being said (and so persuasively), I don't accept that children must play all day long in order to learn effectively and to be happy and well-adjusted. It's not toys or games or wandering around completely self-directed that they need. As a matter of fact, the notion that somewhere in the not-so-distant past, children used to play all the time and were better for it is a fantasy. 

Historically speaking, and in so-called primitive or indigenous societies, children did not play all day at the feet of their elders. They were, at very young ages, taught simple tasks that were important to the overall well-being of the family or social group. Little ones could throw feed to the chickens, pick kindling from the woods, turn skeins of wool into balls, sweep, clean, grind grain, pick rocks from the fields, and so on. Now, I'm not talking about the sort of appalling hard labour that children were forced to perform during the Industrial Revolution. Simply put, there was a time when children, even very small ones, were given valuable tasks to do. Their play time was woven in and through these activities, and adults would guide them along to refine their skills and to impart wisdom. These activities were both pleasant and satisfying because they mattered, they were actually valuable. The image of the unspoiled child at play all day long is more of a projection of adult desire to get away from it all.

I am a Montessori teacher because I have seen its success. Children move about the room purposefully. They WANT to learn. They want to know about colours and shapes, and weights, and why bugs have 6 legs and arachnids have 8. They want to count, they like to do math work. They love learning their letters. The materials that I have to work with are wonderful and the children appreciate the structure in which they are working and the guidance they receive that helps them expand their knowledge. Nothing they do is forced. 

At one point, I was at a crossroads about whether I wanted to be a Montessori teacher or a Waldorf teacher. I was leaning heavily toward the Waldorf for a number of reasons. One long day of observation in the early years room changed my mind though. Children in the Waldorf system are not taught anything academic at all until they are 6 years old, in first grade. As I watched the 3 to 6 year olds play in their lovely room full of activities, I noticed that the older they were, the more they were bored. Their boredom quickly turned into a sort of aggressive, nasty play that bored children engage in. It was quite surprising to me. I wasn't looking for it. It was there, staring me in the face.

Conversely, Montessori believes in sensitive periods. These are intellectual and physiological windows of opportunity where children can acquire knowledge and ability almost effortlessly. Montessori teachers are (supposed to be) trained to notice these sensitive periods and take advantage of them by presenting the appropriate material. This is why early education is sooo important. There is so much they can learn and so easily! And the best part is that it's the sort of learning that becomes hardwired into them and so is never really forgotten. It's not so much the facts that they remember, but the concepts. And these they can apply over and over, all throughout their lives. When these sensitive periods are missed, then they must revert to rote learning. This is much more tiring, and can be much more discouraging.

Sadly, a very significant portion of what is a true Montessori education is being eroded by over zealous regulation of early child care and educational settings. The name of the game is "safety". In the original Montessori schools, children washed themselves, prepared their meals, cleaned up fully. They were free to move both in and out of the classroom. They could bring their tables outside to work, they had gardens and brick work and other valuable, real work. For the most part, this is legislated out of the environments now as childhood experts who set the acceptable curriculum continue to labour under the notion that children learn best by playing (in fake kitchens, with pretend tools, doing nothing valuable for the group or community) most of the day. It's unfortunate, and as a result, some Montessori schools fall prey to pushing their children academically. It's not true Montessori to do that.

So...if you ask me whether I "believe" in play based pre-school or in the Forest School philosophy,  my most direct answer would be "no". It's all about balance. Children love to play with toys and in playgrounds, certainly. Children also love to learn. They love to learn specifics. They love to do work that is valuable to the community that surrounds them. Their work IS their play: not the other way around as it is presented in a very popular online meme. I don't need to believe it; I see it in action every day.

Monday, April 11, 2016

This day

What a weird day I've had.

I go to school and the classroom is rocking with kids working and busy everywhere. It's awesome. Then suddenly I get a text from my daughter's support worker that the school had a bomb threat and was evacuated. "Everyone is safe! We're safe!" What? Huh? Bomb threat!!?? and just before I have a chance to let that reality sink in (that is, picturing someone wheeling my daughter as fast as she can through bombed out hallways, with limbs flying everywhere, and fire and water, and screaming fire alarms....) my boss brings in a set of parents to visit the classroom and they just happen to have their 2  year old with them. This does not fly in a Montessori classroom. A 2 year old can't just walk in and grab shit and go to town, as two year olds are wont to do. But there they are and I have to go into presentation mode for parents, whilst watching this busy little person attack and destroy the room. A quick whisper to the assistant who abandons all hope of maintaining the current order and serenity of the classroom and begins to hover over the rather hefty new little visitor. The other 15 kids in the class are not impressed as they watch junior do all the things I tell them they are not allowed to do. Thankfully, the room dynamic just shifts a bit and everyone carries on, albeit more distracted than what they had been minutes before. My phone rings with a canned school announcement about the bomb threat, I apologize for the interruption to the visiting parents, who blink momentarily, then just move right on ahead 'cause, you know, bomb threats in high schools are fairly common these days. Right.

And another text comes in: Do you want a coffee?  UH HUH. Just pour it over my head before you shoot me, thanks. Love my hubby.

I left work to hit Trader Joe's to buy food for the staff meeting scheduled for later that evening. If there is one thing I know, it's never have a staff meeting with a bunch of famished women. I mean is NOT good. Don't even go there. 

And I get my girl ready for the rest of the day, the support worker gets stuck in traffic and comes late, and then I get stuck in traffic and show up just barely on time for the staff meeting. All is forgiven when I break out the food. Epic win. Meeting goes on until 8. I drive home. My daughter is in bed and asleep. The support worker goes home and the day is over. Sort of over because I still have to make my daughter's lunch for the next day and tidy up the kitchen, which I do, all the while shooting longing glances at the bottle of Bailey's sitting in the fridge.

I feel so weird, so disconnected. My eyes are buzzing. I finish the day out like a zombie because a big chunk of it was not the same as it is day in and day out. I'll tell you that I am a creature of habit. I like routine. Routine makes me feel safe and in control in a world where neither safety nor control exist.  As much as I chafe against the sameness of the daily grind of the minutiae of attending to my daughter's every need, there is comfort in it and stability: boundaries, soft and padded structures against which I sometimes bang my head. But at this point in my life I feel lost without them, since they keep the chaos at bay. And there is much chaos.

I am tired. My job, as interesting and satisfying as it is, takes too much out of me in many ways. But the hours and the not-spectacular-but-above-minimum-wage pay suit the circumstances in which I currently live. But damn I'm tired. And tonight, weirded out, overwhelmed and looking forward to sleep and the restoration of the routine, dawning with the sunrise.

Wednesday, March 16, 2016

Hemp oil headaches

My daughter started taking Charlotte's Web Hemp oil on Feb. 17, 2016.  It started out really well. She had a couple of her typical seizures about two days after starting the oil, which I expected, and then she went for about 10 days without any seizures at all.

Now, my daughter is not like some who seize multiple to a hundred times a day. She tended to have about two to three days off and two to three days on, and usually only had one per day if she had one at all. My daughter does have high tone, however and, along with a bit of seizure control, I also hoped for some reduction in her tone.

The oil worked for both things. The teachers at school reported a marked decrease in her tone and in her complaints about pain. As a matter of fact, she was so comfortable that they had to keep reminding themselves to get her out of her chair from time to time for a stretch and relief from sitting. happy ending, right? Not quite. I have been using herbals and homeopathics and every sort of alternative medication for ages both for my kids and for myself. I knew my stuff. But when it came to the CW hemp oil, I didn't know anything at all outside of some very basic information.

I think that the action of this incredible plant is very complex and accurate, reliable information is  just coming to the fore, accessible to the average parent. There's a lot to learn, though, and to be perfectly honest, I'm too tired to read about it all. But I can tell you, it's been a real roller coaster ride and I'm only a month into it. I have relied a lot on anecdotal evidence (which I value) but it's as broad and variable as the children and adults using the stuff. Here's a sample of my experiences:

My daughter developed an odd looking red skin discoloration on her bottom. I found out quite serendipitously that someone else's kid had the same thing, but on her face. I was told it would pass...and it did thankfully. 

She got constipated for a while, which is the opposite of what was written everywhere.

She developed "the shakes", which is a sign of Valproic toxicity. Now, I was ready for that one, and dropped the med dose, which helped. 

The nice reduction in tone seems to have disappeared and she's back to her "normal", sadly.

Her seizures, though fewer, have been "regressing". That is, I am seeing seizure types and patterns from years ago. I have no clue if this is good or bad or meaningless. Now, I wonder about dosing three times daily instead of twice, to give better coverage against these new seizures, and I can't for the life of me find a way to get around the "minimum two hour rule" where the oil has to be dosed apart from the pharma meds. No one can tell me HOW important this rule is, or if it can be ignored. Giving the oil via g-tube is not good, given the tiny doses, unless I bump up the dose and allow for the stuff that is going to just stay behind, lining the tube. Giving it orally is fine, but not in the middle of the night where I risk either waking her up or the stuff just running right out of her sleeping mouth. My best bet is keeping the meds and the oil an hour apart from each other at this point, but I will end up having to use the tube to accomplish it. 

I'm frustrated. Though I entered into this with few expectations, the initial rush of success got me more hopeful than I should have allowed it to. I certainly won't give up, but the labyrinthine access to information feels daunting. The more I visit Facebook pages and web sites and blogs about the stuff, the more I see that most are in the same boat and the more discouraged I feel. Message boards are filled with "where do I even start?", the simple answer being...just buy it and dose it and see what happens. But stuff happens, and not all in a linear trajectory upwards. I read about tweaking with THC, THCa, with other oils, with other herbs, and just recently, holy cow, someone writing about how they have to transition from one bottle to another by mixing little doses of one with the other! Oh lord. My head hurts. 

Two things: using medical marijuana in any form is a revolutionary act of taking your health, or your loved one's health into your own hands. It's not something most are used to. It requires effort, flexibility and courage. I can handle that. The second thing is that this is no pharma product. It's seems to be almost a living, breathing product that morphs along with you or your child. There are a lot of variables. We are used to products provided from pharmacies with long sheets of dosages, effects and side effects. We are used to guarantees and assurances from the pharma industry and from the doctors that prescribe medicines. This is a whole other ball game. I feel for those who are overwhelmed, scared or unable to make sense of it. Let me tell you, I think people who are turning to this are a particularly powerful and capable bunch. It's good. But be patient all around folks. It's a tough slog, though well worth it.

Monday, February 22, 2016


I just spent a minute or two to wipe off the keys of my laptop. There was some sticky stuff on them, transferred from my fingers after I had sweetened my coffee very early this morning. I remember noticing the little drops of syrup and telling myself to rinse off before I touched the keyboard but I ignored myself. I went for it because I felt that didn't have the time, I thought dammit, the time to rinse off my fingers. I had to shower and dress, get the gal medicated, changed, dressed and fed, pack up my things, pack up her things and run out the door for work. I leave her behind with her support worker to finish feeding her and to get her onto the bus, off to school.

As I drive off, I worry about the dreaded May 24th. That will be her first day home, forever. No more school. That means that I will be still getting up early in the morning to go to work, leaving her with a support person; but then I will come home at 12:30 and watch that person walk out the door, as I take over my daughter's care. And not enough funding for any help on weekends. And I still have a classroom to prep for and little bodies to teach every day. And it's a 12 month a year program.

I'm a newlywed in a new country, in a new job, with a new, severely disabled step-daughter. The title, "What does settling mean to caregivers", an article by Donna Thomson, caught my eye immediately. I like Donna's writing. She knows the score, and she's Canadian! I started wondering about settling: for what does one settle? Do you settle for a lesser job, for less time? Do you settle for less therapy for your kid? Do you settle for the lesser-of-evil-drugs, surgery, doctor? After those frenetic first years of intense caregiving, do you settle for a simpler care routine? Do you ever settle for less life for yourself, or less life for your kid? How do you struggle with settling?

The article, as it turned out, came from a completely different perspective. It's a good, beautifully written piece, but I was a bit disappointed. I expressed that on FB and some amazing discussion ensued (such as it can on a limited platform) from some amazing caregivers. It seems I am not alone in my unsettled and unsettling feelings.

With the passing of weeks and months, time spent shifts to a slower pace.  The caregiver stops wishing to be somewhere else.  Being alone with a loved one morphs into a natural way to be.  And the caregiver notices that the slowness and quiet of care is in itself a presence, not an absence.  Settling for the reduced ambitions of caring for a loved one opens a door to a life rich with humanity and meaning. (Donna Thomson)

I just can't deal with that segment. I am happy for anyone who reaches a state of complete equanimity with their caregiving role. They are lucky people, I think, or maybe they are more disciplined people. I cannot count myself among them. Certainly and long ago, I made peace with the fact that I was going to be my daughter's caregiver for the rest of our lives, but I am not and have never been in a state of perpetual evenness about the situation. The early years were definitely easier to be satisfyingly committed. I felt a purpose, energized (though exhausted) and connected spiritually to the role. But as the months turned to years and past a decade and a half, my enthusiasm has waxed and waned. I have not completely stopped wishing to be somewhere else all the time. Some days, I wish I were dead (though I've never been suicidal). Some days I wish I were alone, truly alone, not alone with or because of my child. Other days, I wish I had at least a couple of true friends whom I could meet up with, who would call on me. I wish I could've had a honeymoon with my husband. I wish that I didn't have to take a part time job because to work full-time, alongside caregiving, would kill me. I wish that I didn't have a job at all, alongside caregiving, because it's killing me. But thank god for my job because otherwise, I'd be perpetually at home, and that would kill me. I would just, for once, like to be spontaneous about something, and, god knows, it just cannot happen with these kids! I chafe at the whole thing sometimes. Not all the time...but I do go through phases of frustration and I don't like that this is not acknowledged. 

And I know that I am one of the lucky ones. My ability to pull off this life is directly tied to a confluence of facts: my good physical health, a strong and stable upbringing, enough money to get by, and a loving, supportive family. Not everyone has this to build on or draw from. What of those people who will admit to finding the whole life of perpetual caregiving one of tedium and unmitigated disaster? Are we to dismiss their perspective as simply lacking and undeserving of our attention? Do they deserve to suffer? Do their children deserve to suffer?

But really, why is "settling for reduced ambitions" to be lauded or made to be a sort of holier or deeper life path to human connection? Why is it that we have to "settle for" or "settle into" anything? Or even worse, have our children settle for lesser lives as a result? It's because our caregiver roles are undervalued, as much our children's lives are undervalued. Parents are expected to take on this role for perpetuity and our kids are expected to have smaller lives. Neither child nor parent is allowed to have greater or other aspirations in life and neither are supported, should they imagine otherwise. Instead, it's just tough luck, life sucks. If we can't find our way into "settling", is a rationalization around the depth of our loneliness and deprivation our only recourse?

I think that we must seek to make caregiving genuinely valuable in a socio-political-economic sense, and cease putting this life solely in the context of blessed martyr or saint. This is not, after all, a religious calling. The caregiver role is subsequent to a series of real life events. We caregivers and our kids have a right to seek fulfilling, vibrant lives, and even if a parent chooses to dedicate his or her life to full-time caregiving, this should not necessitate completely stepping out or opting out of the flow of mainstream living. Conversely, it cannot be acceptable to simply demonize parents who find the life unbearable and wish to seek out alternatives.

Were there real, reliable and individualized supports in place for all parent caregivers, the role would no longer be of necessity an either/or choice between my life or not my life, my child's life or not my child's life. There would be genuine freedom to choose, and every life would have the chance to flower fully and in a satisfying way. Only then could the "door to a life rich with humanity and meaning" be opened and walked through with joyous anticipation, rather than one against which we bang our heads.

Friday, February 19, 2016

Immigration and vaccination and did you know I hate it all?

My Sophie only ever had one DPT shot when she was 9 months old and then I quit the vaccine scene. This was way back in the early '90's. I had done a ton of research way before it was a hot button issue. I used books and a library, because there was no internet then. Way back then, these were the basic bits of information that seemed beyond question:

1. The vaccine schedule and vaccine combinations are the biggest problems with vaccine safety.
2. It takes a lot of dangerous-to-humans compounds to make "safe" vaccines.
3. There is no absolute evidence, statistically speaking, that proves unequivocally that vaccines are what stopped epidemics.
4. There IS such a thing as vaccine injury.
5. Drug companies are heavily invested in paid-by-government vaccine programs. Drug companies are protected from lawsuits by a gigantic, government (that means tax payer) funded slush fund.
6. Vaccines must be handled and dosed with care. There is a lot of room for error in transport, storage and dosage of vaccines. 
7. Most doctors have no clue about how the immune system develops in human beings.

I remember...but cannot now find...a real study from Japan where the incidence of SIDS dropped by 80% in that country when it delayed vaccines for children until their second birthday. There was also a study that showed that all the polio cases in the US at one time were contracted by people who actually had been vaccinated.

So, my eldest got her typical vaccines until age 5 then nothing thereafter, and my Sophie got one, when she was a bit older than what was considered typical at the time. I just stayed away from "well baby" visits because, well, I knew my baby was well and didn't need a doctor to tell me that, or to pressure me into any "extra" health measures. Then I got a piece of paper that said that I was a conscientious objector to vaccination and no one ever bothered me after that.

But, to get to this here US of A I had to run the gauntlet of health measures and that included a whole shitload of vaccine rules and regs. It was almost a deal breaker. I almost didn't come over because of the vaccine demands. But....I got my DTAP and flu shot...and Sophie got an MMR. That is the one that I dreaded the most. If there is any vaccine with a bad rep that goes way back, it's that damn MMR and I had to hit my severely disabled kid with it. And you know what? In precisely 14 days, right on the CDC schedule, she had a "reaction" to the vaccine. Yep, it's called a "reaction" by the CDC. Enlarged lymph nodes, red rash all over the body, runny eyes, cough, fever.  A REACTION.  Yeah. She got the measles folks. The fucking measles. After the shot. She was 20 years old. 

I tried to get her exempted from the whole thing. Believe me, I DID try. But no physician would give it to me. Not even my awesome, progressive thinking, acupuncture doing GP whom I adored. 

So, just a few days ago, I got a super fun letter from the immigration powers that be that my daughter and I have to get Hep B shots and, for Sophie, another MMR.  


Nope. It ain't going to happen. There WILL be an exemption. I will not allow her to be hit again with some bogus shit vaccine that will give her a "reaction". And Hep B? Yeah right. It's not even a real problem in this country, yet babies everywhere are force vaccinated this shit every day. Not gonna happen. 

I am angry and frustrated. And here in the land of the free and home of the brave...there's a lot of forced vaccines. But I will fight it to keep my daughter safe.