Wednesday, March 28, 2012

Wordless Wednesday: A boy and his truck

Look who can stand at a table all by himself for several minutes without falling down!


He loves wheels for some reason.

Tuesday, March 27, 2012

REVIEW: Kids Beyond Limits by Anat Baniel

Note: The following review assumes you've heard of the Anat Baniel Method (ABM). It is the primary methodology we use with Malachi and we've found it to be very compelling, though we are not without criticisms. If you follow the linked text above, you can read everything I've written on the subject.

So, I had very much hoped that I would have finished reading Anat Baniel's new book Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs by today, its release date, but I have to admit that I haven't. I've read most of it and skimmed through the rest.

I received an advance copy to review about a month ago and the bottom line is that I absolutely love it. But even though the book is short, only 288 pages, it has taken me an incredibly long time to read it. That's because it's just packed with things that, well, kinda blow my mind. I've found I have to put the book down at least every chapter to think about how I can integrate its philosophy into my life and the way I deal with Malachi. And I definitely can't read it before bed or I will be up all night thinking about it.

So it's been slow going. But I know for a fact I will read it through again as soon as I finish. And I will make everyone who interacts with Malachi read it. And, if I can, all of you people read it.

If you happen to have read Anat Baniel's first book, Move into Life: The Nine Essentials for Lifelong Vitality, you already know her so-called Nine Essentials: Movement with Attention, The Learning Switch, Subtlety, Variation, Slow, Enthusiasm, Flexible Goals, Imagination and Awareness. These are also the basis of her new book, but I found Kids Beyond Limits to have much more practical advice, useful anecdotes and personal insights. It also seems to reference many more scientific studies than I recall from Move Into Life, and has extensive footnotes. For anyone who enjoyed Norman Doidge's The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, I would consider this a practical guide to that inspiring round-up of neuroplasticity success stories.

What I really loved was that Baniel describes in detail what is going through her mind as she treats kids with special needs and it helped me realize that more than anything the Anat Baniel Method is about how you treat kids with special needs rather than what particular movements you do. Therefore, I really consider this a book that anyone and everyone who interacts with special needs kids should read.

For others, the titles of the Nine Essentials alone might be enough to help them remember what to do in their daily interactions with kids. But for me, I've found more success with pulling out some key phrases that I repeat to myself as I interact with Malachi. Here are a few:

What is obvious to me is not obvious to him. Parents know instinctually that this is true in certain cases. For example, just about everyone would know to keep a newly crawling baby away from ledges. Even though the consequences of gravity are obvious to everyone else, the baby has not yet learned this. Baniel takes this concept a step further and shows how kids — all kids, but particularly those with special needs — are not aware of things that we consider to be obvious and this is the source of much of their dysfunction. For my son, this means that even though he arches his back all the time, he might not actually be aware that that is what he is doing and that it prevents him from accomplishing things like rolling over. So, I've started to play a game with him called "arch, flat, curl" where I playfully point out what he's doing and even accentuate it a little bit with my hands. This has very quickly taught him the difference between these states and he can now curl over to lay on his side pretty much whenever he wants to.

How can I "differentiate around the edges"? Baniel uses the phrase "differentiate around the edges" a lot and by it she means that you start with something the child can already do well and then see how you can build on that — slowly and incrementally. I'm finding this to be easiest to apply in my verbalizations. I have always babbled along with Malachi and Jaden, but now I can add in a slightly different vowel sound or play with my tongue a little more and see if they follow along. Very often, they do, and Malachi has even begun to push his tongue out the left side of his mouth, which he has never done before.

Sloooooow. OK, so this is just the title of one of the Nine Essentials, but it's very useful and easy if you can remember to do it. Just slow down. I take a few beats longer to turn the page, or wait a little longer after pointing to an object they know the word for or take 10 seconds to pick him up from the floor instead of five. What's the rush?

Require less evidence to be happy for his growth. Yes, I did just see Malachi's leg move in a way I haven't before. It's OK to be happy about that. I don't need to have him repeat it immediately to prove it to me and I don't need to keep those happy feelings in a penalty box in my head just in case he never makes that movement again. Neither do I need to wait to be happy until I see him incorporate that leg movement into rolling over. I saw him do it with my own two eyes and he's never done it before. That's enough.

Concentrate more on the process and less on the outcome. This one is really hard for me. Like, really, really, really hard. I'm constantly fighting back voices that say: "If there are no outcomes, what's the point?" But I feel like there is something very valuable there so I'm going to keep working at it. As Anat herself says, if she were required to directly "make" a child perform a certain way, she would have no idea how to do it. She just concentrates on improving their quality of movement and the rest takes care of itself.

Wonder what he'll do next. This one has been great and I've been really surprised and delighted at the results. Whenever I catch myself about to "help" him, I still my mind for a second and wonder, with rapt attention, what he'll do next. More often than not he does something useful or unexpected. For example, today, he was trying to roll onto his side to get a small toy car. He was straining and tensing his legs so much that he would never get fully onto his side. Normally, I would pick up his top leg and push it over towards where he wanted to go. This time I just watched for a second. Then, very gently, I poked his hip and wondered what would happen. Almost immediately, he brought both of his legs up and curled his body to get much closer to the toy car. I didn't even realize for a second or two that that was my desired outcome because I was so intent on simply observing. And the best part was that it came from him which — obviously, but it wasn't really obvious to me before! — is where all of his movements are ever going to come from.

So with all of these lessons and many more, is Malachi's progressing? Without a doubt, yes. In the month since I've gotten this book, Malachi has learned to roll onto his tummy and belly crawl a bit and he is also showing a lot more variety in movement and enjoyment in moving. I'm certain that this $10 book is more useful to me and Malachi than our $3,000+ trip to the Anat Baniel Method Center in San Rafael or at least that if we'd had it we would have gotten a whole lot more bang for our buck.

I would be lying if I said it's not difficult. I struggle with it everyday and still get overly frustrated with myself — and with him. I struggle with how to be discerning without being judgmental and I struggle with how I'm supposed to help him recognize useful actions without imposing on his creativity. There are also several things in the book that make me realize that many of my well-intentioned attitudes and actions towards Malachi (a big one being asking him to repeat his success) have had the complete opposite effect than the one I intended.

But the bottom line is that this approach makes me happier and by extension Malachi. The fact that it also works is almost icing on the cake.


Sunday, March 25, 2012

The Car Gods Hate Us

Check engine light on one,
bandaid on the other.

The car gods hate us. I'm sure of it now. I'm starting to seriously consider sacrificing a bicycle in their honor or doing an oil dance or praying to the big manufacturer in the sky. Anything. Just, anything, to turn fortune to our side.

Things were going OK until the boys were born — you know, right when we could least afford the time or money to have our only vehicle with car seats in the shop.

The first disaster came last summer when the person behind my husband didn't understand the concept of a crosswalk and ran into the back of our 1995 Toyota Corolla, totaling it in the eyes of the insurance companies. We put a band-aid on it (literally, see above) and have continued to drive it. It's been by far our most reliable car.

Our intrepid hand-me-down minivan, a 1998 Toyota Sienna, was a work horse but over the course of 2011 we had spent about $1,000 on various problems and we were looking at needing more repairs soon. We were hoping it would hold on for another year until I could start working again.

As luck would have it, my husband and I were driving along one Sunday and I pondered aloud what it meant when traffic reporters said there was a "car stall" on the freeway. Why would a car just stop working? Gracious as the car gods are, they decided to show me. No more than 15 minutes later, depressing the gas pedal just led to the engine revving before catching and actually accelerating the car. By the next morning, the minivan would only go in reverse, not forward.

Mechanics said we had a major problem with our transmission that would probably cost $2,000 to diagnose and fix. Considering the vehicle was barely worth that if it was working and we knew there were more unrelated repairs in the offing, we decided to cut our losses. I put it up on Craigslist for $1,000, made it perfectly clear that it didn't run and people flocked to buy it. Good riddance.

Right about that time, a good friend of ours was preparing to go live at a science station in Antarctica for a year. Yes, Antarctica. As in the cold, frozen wasteland at the southern pole. Needless to say, he wasn't taking his car, a 2004 VW Golf TDI.

We thought this was perfect, he would sell us his car for a good deal and we knew its whole history. It's way too small for what we really need with twins, but it gets good gas mileage and is a diesel (which at that time was cheaper than unleaded... no more) and also allows us to burn biodiesel if we want to (read: can afford to) be green. It would tide us over until we could afford a new family car and then would replace the Corolla, which was clearly on its last legs. Clean break, fresh start, brand-new (to us), I'm-not-a-soccer-mom-yet car. Hooray!

I am writing this in the lobby of our mechanic.

We have had to take this freaking car in NINE times since we bought it at the end of September — FIVE for the SAME problem. It's cost us around $1,500, in addition to the car payments we've never had before and can't really afford. I want to be pissed at our mechanic but I really do think they are trying to do right by us and they themselves have, at this point, spent several hundred dollars and many unpaid man hours on trying to get the damn thing working right.

I don't want to bore you with all the exhausting details, but it involves a seemingly endless stream of check engine lights, obnoxious sounds and bad smells.

Oh, and then last week somebody broke the window of our Corolla. In the middle of a Sunday. In plain sight on the street. To steal a backpack full of worthless papers. That would be the fourth time our cars have been broken into since we moved into this charming neighborhood the rest of Portland calls Felony Flats. (I would argue that Felony Flats is east and north of here, but I can see how hipsters from tree-lined streets and remodeled colonials wouldn't be able to tell the difference.)

So that's awesome. At least we have a year or two before we have to figure out how on Earth we're going to afford a wheelchair-accessible vehicle.

Gosh, I just can't wait to see what fun the car gods will have with us then.

Anybody know an oil dance?

Tuesday, March 20, 2012

Why does modern medicine throw out our brains?

It is said that during the mummification process, ancient Egyptians embalmed the organs of their dead leaders in clay jars in their tombs. All of the organs, like the heart, the liver and the stomach.

All of them, except the brain, which they removed through the nostril and threw away.

Threw it away.

They didn't think it was important.

Today, we laugh at those ancient masters. How could the brain not be important? The organ that controls all the other organs? The center of our thoughts, emotions, personality, knowledge, memories, the very essence of who we are? The indicator, even, of whether or not a person is alive?

But the more I have dealt with the medical establishment in the last two years the more I feel that modern-day doctors are not that far off from those ancients. It is simply astounding to me how little they take into account their patients' thoughts and emotions, let alone their brain's ability to control the rest of their body.

This despite the fact that nearly every major medical study ever created has PROVEN the ability of a person's brain to heal the body all by itself. In fact, up to 60 percent of the time simply telling a person that they will get better as a result of a treatment — without actually treating them — makes them better.  This truly awe-inspiring capacity has been sneered at as the "Placebo Effect" and brushed aside for more "real" results instead of studied further and harnessed.

It has been thrown away.

This is dismissive attitude towards the brain has been made increasingly clear to me in my interactions with Malachi's traditional doctors and therapists. They talk all the time about Malachi's muscles as if he has a muscular disorder and not a brain disorder. They don't seem to really understand that it is within his capacity to control his muscles or that aiding him in doing so is far more about teaching correct usage than forcing it, as through standers, gait trainers, ankle-foot orthotics (AFOs) and the like.

It's not just that I believe this philosophy is inefficient; I know personally how much harm it can cause not to take into account the human brain's remarkable capacity to control its body.

When doctors told me through a series of intensely shocking and frightening conversations that at five months pregnant I was not only having twins but that they might arrive very soon and therefore die, my brain went into panic mode and I started having minor contractions right there. I was immediately admitted to Labor and Delivery. It wasn't until I left the hospital against doctor's orders that I started feeling much better, and indeed when I returned to the hospital the next morning, my cervix was back to a normal length. This wasn't good enough for them, though, and they continued to outline their doomsday conjectures.

It wasn't until I started researching prematurity in twins that I discovered that the only factor proven to contribute to premature birth in otherwise healthy pregnancies — which mine was — is stress on the mother. Stress. On. The. Mother.

I fully believe that their intensely frightening predictions — based on 3 millimeters difference between my cervical length and normal — became a self-fulfilling prophesy. I have many diary entries to back this up. Every time I had to listen to the incredibly frightening predictions of a medical professional, I had major cervical change after the appointment.

This is all psychological mumbo-jumbo to the medical and courts system, otherwise I might sue them for the harms they caused to me and my sons — most notably the damage to Malachi's brain as a result of his prematurity. But, no, they would take one look at it and say, "They told you you would have premature babies, and you did. Case closed."

But imagine how the scenario could have gone if doctors had taken into account my brain and the psychological harm they were inflicting upon me? I am not saying that they should have lied to me or even withheld information, but they could have told me in a much less terrifying way. They could have supported me emotionally and psychologically. Instead of telling me there was nothing they or I could do, they could have stressed that my brain had the capacity to control my uterus, which is true, and that I did in fact have not only the odds but the power to carry my babies to term, which I did. Instead of turning a pregnant woman who felt perfectly healthy into a house-bound invalid for two months, they could have prescribed massage, meditation, or other relaxation techniques and simple recipes for a nourishing diet. Instead of psychologically chaining me to a bed in a hospital for two weeks where a person in a uniform would come in every four hours day or night to wake me up and remind me that I was in an incredibly stressful and life-threatening situation, they could have allowed me my sleep and empowered my soul.

They could have tapped into the potential of my brain.

But they didn't.

Saturday, March 10, 2012

A day in our life

Friday was a strangely significant day full of growth, new beginnings and development. None of these were huge by any means, but they were mileposts on the highway of life and I thought it would be fun to note them all. It's amazing how quickly we forget what daily life is like and how quickly children — even special needs children — grow at this age.
(The times are approximations, but I think it makes this fun, so just play along.)

6:45 a.m.: Malachi wakes up and simply says "Mama." It's one of the most beautiful ways I have ever been woken up. I go get him and bring him into my bed for snuggles.

6:48 a.m.: Jaden wakes up and starts screaming rather less beautifully. I wait a little bit then go get him and bring him into bed so he can crawl around and pester the cat.

7:02 a.m.: We get up and my husband plays with the kids on the floor while I attempt to make us breakfast.

7:05 a.m.: Malachi army-crawls (belly dragging) several feet on the floor for the second time in his life. He rolls over to his back as soon as we think to take out our cameras.

7:13 a.m.: We discover why storing the broom next to the stove is a bad idea when Jaden goes to grab it (he loves sweeping) and nearly spills a pan of sizzling bacon on his head.

7:40 a.m.: Malachi confirms my suspicion from the night before that he has learned the word "on" by using it repeatedly with a light-up book. This makes it one of his first non-object words, a significant cognitive step.

8:09 a.m.: I try to fold some laundry. Jaden wraps pajamas around his neck, but they keep falling off and he gets mad. I pile them on his head. He walks around like this until they fall off and then runs back to me screaming and clearly demanding that I put pajamas on his head again.

8:41 a.m.: We go outside to discover it is the first true day of spring. It was actually SUNNY and WARM in OREGON in MARCH. I wore flip-flops all day. We got to turn the heat off inside and go play outside. My neighbor's daffodils that I noticed pushing up from the ground two days ago have blooms. The world is beautiful.

8:54 a.m.: At the discount store, I ponder how I could possibly use a bag of six red onions when I only need one, while Jaden screams bloody murder about his desire to fondle and consume the entire nearby display of bananas. I decide that for $1.49 I will somehow find a use for the other five onions and continue on to buy a can of tuna... and a bunch of bananas.

10:07 a.m.: I drive to a playground that is way above Jaden's developmental level — he wants to climb into all sort of dangerous positions while I'm trying to save him and not drop Malachi — and we all have a terrifically horrible time while the other parents wonder why on Earth I'm not standing back and just watching my kids play like they are.

10:20 a.m.: I abort the playground idea and head towards the wetland area of the park with boardwalk trails that Jaden delights in following.

10:26 a.m.: Jaden learns the word "duck" for the first time. Malachi points at the birds and also says "duh!"

11:23 a.m.: Back at home, I show Jaden what the whip-like cat toy is for and he finds it HILARIOUS to watch our otherwise lazy, old cat jump, twist and attack.

12:00 p.m.: I feed them fish (canned tuna, with some red onion) for the first time in their lives.

12:06 p.m.: Malachi demonstrates for the first time that he knows the sign for "different." So, I add peas, toast and grated cheese to their trays. The tuna is mostly ignored.

12:13 p.m.: During an apparently hilarious game of "put a finger in mom's mouth," I reciprocate and discover that Jaden has not one but THREE new teeth, which may explain the few nights of screaming awake several times and the constantly shoving fingers in his mouth. Although, really, he's been shoving fingers in his mouth ever since he realized he had fingers and he hasn't gotten any new teeth since about August. Malachi's gums are still fairly smooth — no doubt his will take longer since he doesn't bite as hard.

12:24 p.m.: I sing the female part of Gotye's "Somebody That I Used to Know." Both boys listen, staring at me in dazed silence. I finish and Jaden signs "again" for the first time in his life. I'm flattered and sing it again. He signs "again" again. I decide that looking into my sweet children's faces and singing: "Now and then I think of all the times you screwed me over," probably isn't the healthiest thing to do and refuse. Crying ensues.

12:37 p.m.: Malachi demonstrates for the first time to me that he knows the sign "all done."

12:41 p.m.: I discover why having a dish-drying towel on the counter is a bad idea when Jaden gives it a yank and a wine glass shatters on the floor.

12:41 p.m. and two seconds: He attempts to clean up said wine glass shards.

12:42 p.m.: After securing Jaden in the living room, I meticulously pick through, shake off and clean all the toys, books and plasticware that were on the floor and sweep the floor three times to make sure all the broken glass is gone. Did I mention I wore flip-flops today?

12:55 p.m.: I give Malachi his noontime bottle, which he still needs for nourishment. Jaden climbs into his nighttime bottle spot on the couch and is angry when I don't come to give him his decoy bottle of two ounces of cold milk (he won't really drink it if it's cold but it saves me from listening to him scream the whole time Malachi gets his). 

12:56 p.m.: Jaden stomps over to get his milk and wanders back into the living room. I tell him repeatedly that he needs to "stay in the kitchen" and though he comes back momentarily, he then starts edging further away each time I call his name as if I'm playing a game. To make it clear to him that I'm not playing a game, I take the bottle away. He cries — full on tears streaming down his face — while I wait and then explain that he needs to "stay in the kitchen." 

12:57 p.m.: Still sobbing, Jaden wanders back to the living room and tries pathetically to clamber back to his nighttime bottle-drinking spot on the couch — clearly bewildered at the request I'm making of him. I take pity and bring him back to his high chair and give him the bottle. Everyone is happy.

1:10 p.m.: Naptime. Everyone is happier.

3:52 p.m.: We go to the Rhodedenron Garden where Jaden is extremely excited about showing off his new word: Duck. 

3:58 p.m.: I have to tear him away from the first pair of ducks with promises of more ducks just on the other side of a bridge. After tears and some thrashing, he decides to trust me, signing "more" and then running off in that direction. 

3:59 p.m.: He stands stock still in amazement at the dozens of pairs of ducks and geese in the pond. 

4:02 p.m.: Our ensuing conversation goes like this:
Jaden: "DUCKS!"
Me: "Yes, ducks! Look at that one, see how pretty its wings are? Those are 'wings' that it's flapping. And look, there's a brown one. She's a girl duck. And the one with the green head is a boy duck. Do you see the girl and the boy duck?"
Jaden: "DUCK!"
Me: "Yep, that's right. And see those bigger ones over there? Those are geese. The big ones are geese. Very pretty, huh? Geese. Stay away from them though, because they can get mean."
Jaden: "DUCKS!"
Me: "Not exactly, those are geese. Do you remember from our book? Goose."
(The book with the goose in it is in Japanese so I switch to Japanese:)
"日本語 で 「がちょう.」 がちょう は 「があ, があ, があ」 って."

Jaden: (pause) DUCK!
Sigh. Well, at least I can tell people he's a Duck fan.

4:11 p.m.: I take this photo of Jaden:

4:13 p.m.: I discover a good way to make Malachi smile for photos is to say "Eeeeeee!"

4:15 p.m.:

4:17 p.m.:

4:24 p.m.: We stop for a snack and Malachi eats a quarter of a banana that my husband feeds him right out of the peel. We usually have to mash it up for him. We remark on how well he's doing lately.

7:37 p.m.: My husband makes this beautiful and strangely calming video of Malachi's face in the bath. It's like watching a campfire.

7:42 p.m.: Jaden finally gets his nighttime bottle in his special spot on the couch.

8:00 p.m.: The boys are so tired they go to sleep without crying.

8:30 p.m.: We are so tired we go to sleep ridiculously early.

Wednesday, March 07, 2012

A day when people listen to the power of their own words

I'm hoping that by the time my kids grow up it will seem strange to need to designate a day in which we talk about whether or not the words retard and retarded are offensive.

But for now, we do.

Today, March 7, is that day, designated by Spread the Word to End the Word, a campaign launched by people with disabilities and part of the Special Olympics.

Last weekend, a very sweet and kind woman used the word "retarded" twice in my presence. I was taking a vacation from all of that stuff, and I didn't want to interrupt the conversation to get on a soapbox about it.

Even someone as outspoken as I am needs to take a break now and then.

So I don't have an r-word post for you today, like I did last year.

But there are many other wonderful, amazing women out there in Blogland who did find the energy and they've said it even better than I could. I really encourage you to read at least one of these posts to discover why using this word in casual conversation, whether or not you are referring to an actual person with disabilities, is not acceptable. In fact, it is even more disheartening that so many bright, intelligent and caring people are so blind to this word's impact on people with disabilities and those who love them.

Would you call my child a retard? by Love that Max

About a Boy. And a Word. by Finslippy

Spread the Word to End the Word by Redneck Mommy

Stop Saying It by Four plus an Angel

Spread the Word to End the Word by Bringing the Sunshine

Retarded: A Word by These Broken Vases

I've also found these videos over the last few months and I think they are both beautiful and powerful:

So please pledge to stop using this hurtful term in casual conversation. I'm not entirely sure why people are so resistant to using a different word to express themselves, but if you can find it within yourself, it would mean the world to me.

And my son:

Monday, March 05, 2012

Aaaand, I'm back.

Hi folks!

Sorry about that. Of course my website would go down the one weekend I was without Internet!

Anyway, we should be good for a while.


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