Thursday, October 27, 2011

Did it work?

If you read last week's post, you're probably wondering if our 1700-mile roundtrip to the Anat Baniel Method Center in San Rafael was worth it.

Well, I think the answer is yes. Yes with a but.

See, Malachi did improve quite noticeably. No, he didn't achieve any of The Important Milestones, but his body was much looser and better organized. He was happier and wiggled a lot more. He arched his back in controlled ways, such as to reach the edge of his highchair tray, instead of reflexively. He ate and drank better. He manipulated objects with his hands much more fluidly, and he was more tolerant of putting weight on his hands and elbows. And the crowning achievement was his ability to bring his legs up and over to roll onto his side, instead of arching his whole backside in a crescent moon shape.

This isn't the greatest example, but it shows
Malachi trying to lift his legs while rolling onto his side.

Notice I said was. Already in the time we've been back, I haven't seen Malachi pull his legs over nearly as often or as easily. I can feel the gains he made slipping away and for all my talk about how expensive it was to go down there, I want to sell my house and go right back. I feel like a drug addict and Malachi's progress is my crack.

Which leads me to my biggest criticism of the Anat Baniel Method: it's ridiculously expensive. Don't get me wrong, Anat Baniel has come up with an amazing thing and she deserves to get rich because of it. Likewise, she and her practitioners are providing a benefit that outweighs any of the doctors that we've seen and — combined with our insurance — paid thousands to. But this is not covered by insurance; not even a little bit. Not to mention, the training for this method is far, far less time and money than the four years of medical school and years of residency those doctors are required to take. The appointments look like a combination of massage, acupressure and guided yoga, yet at even half their $200-plus fee* they would be more expensive than any of those proven (i.e. researched) therapies.

So what gives? I did ask one person there why the sessions were so expensive and he not only didn't have an answer for me but didn't realize how much they were. He told me to ask the accounts receivable person why they are so expensive. If I were still a reporter and this were some kind of newspaper story, I definitely would, but I'm fairly certain that she doesn't have any idea either. That is simply the intersection between how much they feel their expertise is worth and how much they feel desperate parents are willing to pay.

When I started out looking for alternative therapies for my son's condition I had no idea what to base my judgement on since none of those methods had any definitive science behind them. I decided to go with my gut instinct about which practitioners seemed to really care about Malachi and which were going through the motions. Perhaps not coincidentally, this also happened to be those practitioners who were willing to give our struggling family a discount on their fee. That is how we found ABM and I'm eternally grateful to our practitioner for being so generous that we stuck with it and for continuing to be so generous that we can afford to continue.

But we won't be able to afford another trip down to California for quite some time — if ever — and that's where we saw the big gains. Even if we went with a more experienced ABM practitioner here in town, it would cost $600 per month to do the same schedule we are doing with our own practitioner. That's just not going to happen.

So, sorry, Malachi. I guess you should have chosen richer parents.

*We paid per-session fees of $200 and $250 to our two skilled practitioners in San Rafael. Anat Baniel herself is considerably more expensive. Run-of-the-mill practitioners, such as one you may have in your town, are considerably less. Each session is 30-45 minutes.

Wednesday, October 19, 2011

On our way

White-capped Mt. Shasta in the far distance.

It seems like many of the parents I've met in the special needs world go on at least one crazy, expensive trip to a far-away clinic that promises results. 

We are on such a journey right now. 

As I write this we are crossing the border into California on our way to the Anat Baniel Method Center in San Rafael, in the Bay Area. Because we have not one but two babies, this 10-hour drive is taking two days each direction, driving at night so the twins will (mostly) sleep instead of (mostly) crying. 

(Added later after we arrived at our hotel room: This tactic was not entirely successful. An hour into the second leg of our journey, Malachi threw up Pediasure everywhere necessitating a hasty and totally gross pitstop. Four hours later, we arrived at my sister-in-law's house in Northern California where the boys woke up thoroughly and completely. I fed and played with them until 3:30 a.m. before I could convince them it was now "nap" time.)

Once we get there, we have rented a hotel room a few blocks away from the ABM center, where we have pre-paid for four days of twice daily lessons of 45 minutes each. Each of those lessons costs around $200, which insurance doesn't cover at all because this unproven method doesn't even have the credentials to be called a therapy.

All told, the trip will cost our single-income family more than $3,000 at a time when we are scraping the bottom of our savings and our minivan just died.

Needless to say, we are hoping for some real results for that kind of scratch. 

All of our other therapies — including aquatherapy at more than $400 an hour — are mostly paid by insurance or the state. It definitely makes you reevaluate what sort of results are "good enough" when you personally are throwing down the cost of a car for a treatment program.

So what will be "good enough"? What will it take for us to consider this trip a success?

I don't know yet. I guess I'm hoping for one of The Important Milestones, like rolling from back to front. The irony, though, is that this particular method says we have to keep our goals "flexible." (The cynic in me, of course, says this is code for "unattainable.")

But then, here's the clincher: what if it does work? Will all of our future "vacations" be to San Rafael? 

One family I met a few months ago had gone all over the world and done almost every alternative and conventional therapy to teach their teenage son to walk, with mixed but ultimately temporary results. While I listened to the mom, I couldn't help but wonder how much money they had spent on all those treatments and how much pressure her son felt for never getting well enough, never being good enough.

On the one hand, you feel as a parent of a special needs kid that nothing else can be more important than providing them the most opportunity to improve as possible. That's why my husband and I did make the decision to spend our paltry life savings on these treatments — because what is a trip to Hawaii when your son's very future is on the line? What sacrifice of leisure and comfort would not be worth erasing the damage from that damned brain bleed?

But on the other hand, you know that there is a line. Malachi has many facets that do not include his disability, so turning "curing" him into the focus of our lives will ultimately cheapen his existence, not enrich it. 

So where do we find that line, and how do we know when we've crossed it? I don't know. I'll let you know if I find it as I drive past mile after mile of golden California hills. 

Thursday, October 13, 2011

One twin's parents are nothing like the other's

Jaden's parents would never dream of giving him Pediasure or other corporate, processed food products designed to mimic actual nutrition.

Malachi's parents worry when he doesn't eat enough of it.

Jaden's parents drop him off at babysitters' houses with little to no explanation beyond when he last ate and slept.

Malachi's parents leave detailed instructions on everything from how to play with him to how to change his shirts to how to make his bottles.

Jaden's parents would have kept him in cloth diapers until he was potty-trained.

Malachi's parents worried the bulky diapers were interfering with his mobility.

Jaden's parents let him cry and get dirty and scrape his knees.

Malachi's parents squabble over how much crying is too much and they never feel able to put him outside without a blanket between him and the elements.

Jaden's parents let him figure things out for himself as much as possible.

Malachi's parents push him every day to learn more, better, faster.

Jaden's parents expect him to eat whatever they give him, even if it's not his favorite food.

Malachi's parents often resort to tried-and-true standbys.

Jaden's parents greet each of his new milestones with mild pride and sometimes a twinge of annoyance.

Malachi's parents are absurdly proud at the smallest achievement.

Jaden's parents are reasonably confident in their ability to raise him.

Malachi's parents have read countless books, talked to even more experts and yet still don't feel at all prepared for whatever his childhood has in store for them.

Malachi's parents are nothing like Jaden's parents.

I never wanted to be like Malachi's parents.

Wednesday, October 12, 2011

Wordless Wednesday: Spotlight on Jaden

Strangely, this is the same look I had on my face when
I discovered the kitchen disaster in the previous picture.

Wednesday, October 05, 2011

How Occupy Wall Street will fail

Well, now I've gone and done it. I sent this late last night to an editor friend of mine, who promptly put it up on the Portland Tribune's website, which was not really what I intended at the time.

Oh well.

I guess I'll post the full html version here so people can see my links. Sorry to those of you looking for special needs fare. This is political, but an issue I feel affects us all.

If you happen to live in Portland, please join the forum so we have a chance of creating a safe, legal place to protest.


Tuesday morning I woke up with hope in my heart and excitement running in my veins.

Well, no, that's not true. That morning I woke up to screaming babies, a mountain of debt, a house worth 30 percent less than I paid for it, a broken-down car and an exhausted spouse.

But after that, I did the hope and excitement thing. That's because I had heard about Occupy Portland and had spent an hour of precious sleep time making (extraordinarily clever) signs for the event.

In case you aren't aware, Occupy Portland, beginning Oct. 6, is one of many protests in solidarity with Occupy Wall Street, a protest that's been going on in New York every day since Sept. 17. There are similar protests sprouting up across the nation and there is no leader and no real agenda. This is simply a wellspring of public anger from people of all political persuasions saying enough.

Enough with corporate bailouts. Enough with ineffectual politicians. Enough with the rich getting richer and the poor getting poorer.


And I thought this effort had a real chance of succeeding, too, because it seemed to have all the right elements: It wasn't for or against any particular politician or political party. It offered a framework for success but allowed people to fashion it in their own image. There was no single leader or sponsoring organization that could turn into a flashpoint for division.

But the kicker — the real message in this message-less, agenda-less, angst-filled public wailing — was this: There, people displayed messages of their sorrow on hand-written papers in front or beside their face. There was the immigrant who came to the land of liberty and worked two jobs to put herself through college but is now facing zero job prospects with an ailing mother to support. There was the 60-something architect who worked hard to pick himself back up and rebuild his business after the 1988 banking crisis and is once again left with nothing. They are all part of what is being called The 99 Percenters, those who do not have the unimaginable wealth of the richest one percent. By showing how much we all have in common, they created a space for solidarity in a deeply divided nation.

But by the end of the day, after I pored through the Facebook page and the event page and the forum and even dragged my butt down to a General Assembly meeting, I realized the fatal flaw in the movement. It's the same fatal flaw in every movement, from the anti-Vietnam War protests to the 1999 WTO protests.

Those goddamned radicals.

Don't get me wrong, everyone is radical about something. The Tea Partiers are so radically anti-tax that they don't notice the irony in protesting on tax-payer-funded sidewalks. Wall Street execs are so radically pro-capitalism they don't realize that the casino they're running isn't a free market.

Me, personally, I'm radical about the need for these Occupations to be peaceful. For better or worse, that means working with the police, something Occupy Portland has yet to do.

I grew up distrusting police, but I've since had many positive encounters with them. I believe they too are part of the 99 percent. I believe they have stressful, dangerous jobs and have to make snap decisions about who and what is a threat. I believe they have to work overtime, taking time away from their families, on a moment's notice, because of annoyingly unorganized protests exactly like this one.

But most importantly, I believe that protestors are guaranteed conflict — likely violent conflict — with police if they refuse to cooperate.

That's why — despite all my initial enthusiasm — I likely won't be participating in Thursday's protest. If I can't be sure of a safe, legal, family-friendly place to gather, then I won't go.

Anthropologist Margaret Mead famously said: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has."

I wish she had said what to do about how those people can distance themselves from an even smaller radicalized group who derail efforts to create change the whole world can take part in.

Saturday, October 01, 2011

Malachi's Menu

I wrote this letter for our daycare and thought it might interest you folks, too. I haven't talked much about Malachi's swallowing disorder on this blog, but I would say it is a major part of our daily life. Jaden can eat pretty much anything, whereas Malachi has a narrow diet consisting of thick purees and — much to my chagrin — super-sugary Pediasure, because he is unable to chew and swallow properly.

For readers who aren't parents, I should explain that "solid food" for babies means anything that isn't milk. For readers who are parents, towards the end of the letter are food ideas that we use that might be helpful for you or anyone with a typically developing 6- to 12-month-old.

If anyone out there is also dealing with dysphagia, I would love to have your comments, advice, etc.

Malachi has a swallowing disorder called dysphagia, which doctors tell us is unlikely to ever go away. For him, this manifests as a delayed swallow reflex, which means that he is at risk of inhaling his food, which in turn could lead to aspiration pneumonia and even death.

Fun stuff.

Malachi also has trouble closing his mouth completely, chewing his food appropriately and moving the bolus (food blob) around in his mouth with his tongue. 

Combined, these problems force us to feed him only pureed food or dissolvable food (i.e. things that become puree when in contact with saliva, like Cheerios and Gerber Puffs). 

You are welcome to try foods that seem to conform to this list, but only try small amounts and stop immediately if he coughs and gags. Do NOT try hard foods, such as real fruit pieces (no matter how small) or bread or other things that would choke a 6-month-old. 

The overall goal of food we offer him is that it be thick enough to slow down the swallowing process. Thin, watery foods can shoot quickly down the throat, too quickly for his muscles to react. 

The secondary, but also very important, goal is to provide him with as many opportunities as possible to direct his own eating. Intentional action plus success equals brain connections, so the more he participates and is rewarded for his participation, the better. This means offering him self-feeding foods at every meal and waiting for him to open his mouth or otherwise indicate interest in food before putting the spoon in. This also means stopping when he repeatedly refuses to eat, no matter how much or how little he has eaten.

This is all much harder than it sounds, as I am intimately aware.

Malachi needs to be supported while he eats so that he can concentrate on his mouth. We feed him in a chair that fully supports his back and head and is reclined at about 60 degrees. We also put a rolled-up dish towel on his left side as he tends to lean that way and can get stuck if he goes too far.
In recent weeks, we have also fed him a bottle this way. However, if he is particularly fussy or tired we go back to the old way. The old way is reclined on a pillow at 45 degrees with his head and, ideally, his entire body turned to the side with his legs tucked up and his chin tucked down. This prevents liquid from seeping down his throat by using gravity and the natural throat closure that happens when your chin is down.

Malachi takes Pediasure after solid food meals. It needs to be thickened with two scoops (1 scoop per 4 oz) of Thick It. You will likely have to pour about an ounce out to accommodate the powder. I've been told it is ideal to whisk or stir it, but I haven't attempted that inside the bottle. If you do shake it (as I do) shake it as lightly and as briefly as possible, otherwise the Thick It will form hard, clear chunks that clog the nipple. Even if you have done it perfectly, you often need to check the nipple for clogs. Watch as Malachi is eating and if you stop seeing bubbles or don't think he is swallowing or if he makes frustrated sounds, pinch the nipple below the hole and squeeze upward until you see bubbles or liquid come out. Careful, the clog can come out with some speed. 

Sippy cups:
Malachi should really only get water in a sippy cup, away from food. As long as it is clear water, it is unlikely that aspirating it will do damage to his lungs. He will likely cough after sips so be careful not to overwhelm him.

Things he can feed himself:
Veggie Sticks
Skinny Fries
Graham crackers (Honey Maid dissolve best. Off-brands not as well)
Cheerios (the multigrain are best because they are "lightly sweetened" making them stickier)
Puffs designed for babies (Corn puffs tend to be a perfect size and shape for his hand) I tend to use these sparingly as I don't think they're very healthy
Baby Mum-Mum crackers
Very thick purees (the consistency of refried beans, mashed potatoes, or sweet potatoes — this gets very messy, but he can get a little in his mouth)
tiny pieces (the size of HIS fingernail) of freeze-dried (not dried or dehydrated) fruit — these sort of melt away 
Real fruit in a mesh feeder (we haven't had great success with this, however)

His favorite spoon foods:
*Yogurt (I use plain Nancy's organic full-fat)
*Gerber Mango puree  *These are his favorites
Fruit purées (pear, applesauce, banana, etc.) WITH baby cereal mixed in to the consistency of creamy peanut butter
Gerber Peas, sweet potatoes, squash, also with cereal to desired consistency
cereals mixed with sauces, such as wheat cereal with tomato sauce
real food that has been through a baby food mill
Most other Stage 2 purees, with cereal to desired consistency (so far he absolutely hates Green Beans and Peaches)


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