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. 



9 comments:

  1. Good luck! I hope you get some results, even if it's not the next big milestone. We're throwing down about the same to take Julia to a conductive ed camp in Virginia in December, and we're of the same mindset - for that amount of money (and we're splitting ourselves up to do it, too), we want to see SOMETHING, but we're not exactly sure what that something is. I guess we'll know it when we see it?

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  2. Yup- been there, done that. Except we flew from Australia and did 2 weeks of 2x/ day. Three times. No big wins for us. Best thing turned out to be finding a great local person to work with. It's a brilliant technique but I'm sure we squandered some of our gains on jet lag and being away from home. Sustainable therapies are the best. But we know kids who are less severe who have big breakthroughs with Anat. You've got to try! All the best.

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  3. You will know if you ever cross the line. One day, Malachai will reach a certain level and you will know. Because you are wise enough to know the line exists, you will be careful not to cross over. Malachai's quality of life and spirit for living will tell you.

    I'm so glad he has a wise mom and dad! I hope your trip has some worthwhile, permanent results!

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  4. Ah yes - the hope of new things. We've tried lots of things, and the key for us is having only vague goals, because these kids will do what they want! The answer really lies within your own family - for some, lots of faraway options are ok, and for others, local works better. We're more in the latter category, but we've done faraway therapy trips too. Right now, we're balancing the needs of the family with the needs of the special needs kiddo, and sometimes that means not as much therapy as we like, but we still can usually find something locally to try too. It took time, but we eventually made peace with this part of our life and we're now "winging it." Good luck.

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  5. Good luck and safe journeys, Shasta. I've no doubt you'll recognize that mysterious line - because you're on the lookout for it. And, as with most things in this life, I imagine it'll shift on you from time to time, and then you'll do what's best for Malachi and your family. Your sons are lucky boys to have such loving and aware parents. Go Malachi!

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  6. Such an interesting journey you are on with the juxtaposing twins. I think this is actually harder for you because you have a direction comparison. I only have the one with CP and do not know what else there is or how easy or hard I have it. You are reminded every day. I wish you the very very best outcome in your trip and will be very interested to see if it is something we should be pursuing. I related to this particular blog on many many levels. God bless you and your family

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  7. Sigh.

    You'll dance this dance with yourself for years - I'm still doing it with Sarah Kate, even though she's almost 9. It does seem to slow down once they get a little older, though. Of course, now I have another one in therapy. :)

    I think you'll know when you get there, and as difficult as the costs are to manage, you have to consider whether you would regret it if you didn't try.

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  8. Thank you so much for all of your responses. It's been a good trip so far — busy, no big revelations, but it is nice to all be together and to meet other parents on this path.

    Amy: I keep meaning to research CE, I've heard a lot of good things about it. I really hope that does well for you and I can't wait to hear the results.

    Ennydots: That's interesting to hear. Yes, both of the kids are sick and stressed and we're staring at 10 hours in the car again for the drive home, so I wonder if even if we do make gains will they be too fragile to last on the way home? Also, I wonder if maybe Anat is the miracle worker and not necessarily the method? Too bad we can't afford her.

    Faith: Thanks for your encouragement. We need it!

    Jenny: I think those vague goals are why you're so OK with it. Everything I've heard is that vague goals make for happier people.

    Jill: Thank you! I think this is a line many parents deal with.

    Robyn: Yes, I am reminded every day and it hurts especially when Jaden steals every single one of Malachi's toys or people ask us if "they" are walking yet. But it seems like as they become more and more different the direct comparisons are harder to make and so it actually gets easier.

    Andi: Totally. I definitely think it's worth a shot even just to be able to look back and say, yes, we did everything we could.

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  9. You are amazing parents to be doing what your doing for your kids! I shouldn't complain about my own issues. I love the fight that you have in your spirit to never give up! I'll be praying for your family.

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