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Wednesday, December 22, 2010

On Hope and The Cost of Hope

I wanted and still intend to post a cheery entry for this Christmas season. It will likely be about Finbar's reaction to the entire holiday season of events....

 However, at the end of the year, I always feel a bit torn in two.  On the one hand, I absolutely love spoiling my kids, no matter how bad they've been (get that from my Dad), for both their birthdays, which are in December, AND Christmas.  For me, this is the time of year that I take stock of what they have, am grateful that they still enjoy 90% of it active boys that they are, and think hard about getting some things that would be useful to their development and enjoyment and which keep the dream of Santa alive.  And I just feel like no matter what the price, if they really really want something appropriate and meaningful, then it is worth it. 

This year for example, after watching Polar Express again, tears in their eyes, my boys asked for a Polar Express train.  This being 7 days before Christmas on a weekend.  Off to Ebay I ran.  Found it of course - for a price.  I could kick myself for overpaying to get it expedited to the house in time for Santa to deliver it, but I can't put a price on my sons' faces when they open it and BELIEVE that Santa got their request and delivered.  And I will say, that Polar Express is one out of only a handful of movies that Finbar will actually watch.  And it is because it is such a moving emotional film.  So it is worth it to me. Now I just hope that Ebay seller makes good on his promise of a Dec 24th delivery :0

On the other hand, I always end the year with a sinking feeling in the pit of my stomach. The feeling that I have spent too much (and not given enough to church and charity) and drained too many resources for the coming year all in the name of "Joy".   This year, like many I suppose, I am particularly preoccupied with this feeling of overspending.  And I am resentful. Yes, I admit it, illogical as it may seem, resentful.  Putting aside the many families in the world less fortunate than we, those struggling with children whose upbringing and health is costing much more than ours, I am PO'd by the amount of money we spend every year on HOPE.  That is to say, in the HOPE of recovering our son and stabilizing his physical and emotional health over the long term.  I have to remind myself that this is a marathon, not a sprint. That we make educated choices about when and where to spend on Finbar and that every year is different. We are lucky we have the money to spend.

Nevertheless, the total bills associated with therapies, doctors, meds, supplements, this year amounted to well over $10,000,  not even counting the hoards of overpriced organic, non preserved food from Whole Paycheck, or the thousands we pay in health insurance premiums or things like the numerous hours of ski lessons at Mammoth Mountain with the special needs organization known as ARC. I know that many of these expenses are privileges that we choose to use, but...they all contribute to the well being of my son.

I used to work with the organization called Talk About Curing Autism (TACA).  Their tagline is "There is Hope. Recovery is Possible."  I do agree a la Jenny McCarthy with this optimistic statement. Many disagree stating that children with autism need to be cherished for the gifts they bring and do not need to be "fixed".  I agree with both schools of thought and I do not think they are mutually exclusive. You can HOPE to bring your child closer to a state of normalcy, where they can cope with and be happy in the real world (particularly once you are no longer around to care for them).  And you can take any steps necessary to do so, often in spite of cost,  as we do.  However, if you blindly pursue that vision and miss what is in front of you in the meantime, then you have lost the plot that is your child with autism.  Here is an excerpt from the TACA website about what I call Hope....


Where Are We All Going?

We are trying to achieve our children’s true potential with the final destination unknown. Our children are not a diagnosis; they are children with a promising future AND we will never give up.
Always looking for new resources to add to the puzzle picture. The goal is often recovery, but if not achievable, keep the back-pocket goal of increased independence.
You did not sign up for the autism journey, but you are here. Remember that redisposition/diagnosis does not mean a pre-determination of the future
Although you are now on a different path; it may be the most gratifying journey you have ever been on and for the best cause of your life.


So I do buy into the scenario that recovery is possible, but I tell myself that I do not want Finbar to fully "recover", whatever that means. I do not want him to be normal. Normal is boring. I am not normal and I like myself that way.  To me normal is doing what 90% of the people around you do, like a herd of sheep. "baaaa, let's put our kids in soccer". "bbaaaaa, let's dress our 5 yr old girl like Lindsay Lohan"  "bbaaaa let's give our 10 yr old a cell phone" "bbaaa my son must become a lawyer or doctor".....There is a movie I have been meaning to watch. Filmed by a teenager with autism, called "Normal People Scare Me". There is truth in that title.

Nevertheless, back to Hope, one hopes that their child can make one or two close friends in life.  One hopes that they can develop a diverse enough palate for healthy, nutritional food so that you can go to a variety of restaurants for fun.  One hopes that a child will develop and pursue an interest or hobby that may even earn them money someday.  One hopes that a child can jump, run, kick and throw a ball with the rest of 'em  for fun and games.  One hopes that their extremely bright child does not have a learning difference or attention problem that hinders learning in a classroom environment with peers. One hopes for a lot in a child. And I am only 6 yrs into this.

I think of a mother I know a little, whose girl, same age as Finbar, has been diagnosed with a terminal brain stem tumor.  Sometimes I read her blog, but seeing entry after entry with no hope of recovery other than a miracle from God above (and I believe miracles can and do happen) I wonder in my own little world what I am hoping for for Finbar exactly.  Shouldn't I be satisfied? And why are we spending all this money that we could be spending on everything from toys to vacations to college to retirement on hope? I mean at least he doesn't have cancer!

And with all this universal health care talk (ironically under the guise of "Hope"), why doesn't the government pay for our medical costs for Finbar?  The numbers are staggering, the studies are out there.  Don't the statistics on autism speak for themselves?  What more does the government need to help families out? Sure there are programs in place, but they are lacking and with budgets being cut as I type.   As at this year end, I submitted $3000 in occupational therapy bills that were then rejected by my health care provider, and then saw our premiums rise by 30% for no real reason except Obamacare, I was PO'd at the world, at Blue Cross, at Obama, and everyone in between.  How much longer can my family afford to pay the price of hope?

Here is a little run down of extra costs embedded in that hope:

Organic strawberries - $2/lb extra per week
Gluten free bread - $7 per loaf vs. $3 for regular bread
Coconut milk kefir - $6 per bottle vs. $3 for regular kefir
Vitamin B12 shots - $50 per month
Chelation - $150 per session, every 2 weeks
DAN! doctor visit - $150-$300, 3-5 times a year
Occupational therapy - $160/hr, one hour a week
Therapeutic riding - $50/hr, one hour a week
Bottle of cod liver oil - $30 per month
Brain Integration Therapy - $1500 x 2, not including flights, transport and lodging and meals
Privately paid behaviorist (because the gvt. sponsored programs don't work for our family) - $15/hr, 10 hrs a week
and on and on and on

I feel sorry for families that can't afford all this, as it truly helps my son.  I feel sorry for the kids that don't get the nutrition they need to focus in the classroom, because mom and dad can't buy premium non preserved non processed foods.  I feel sorry for the kids whose parents can't participate in behavioral programs with their child because they have to work all day all week to make ends meet.  I feel sorry for those who don't have health care - cleaning up their child's gut and metals toxicity isn't even in the ballpark for them .  So in my resentment, I am grateful. Grateful to God above for providing. Providing more than many have.  Providing hope. And I will continue to hold out hope for my son.

In the meantime as I am typing this, Finbar has come to me and asked me if I added Hide and Seek Jo Jo to his list for Santa. I affirm this. However, I have already sought it out online and being a Walmart exclusive and heavily advertised gift this year, they are sold out.  Oh well, hopefully the excitement over Polar Express will help him forget the one that Santa didn't deliver :0


Rebecca Royce said...

Jen--I was just having this conversation with someone recently on the cost of everything. Austin has to start a round of OT (Teacher and I think he has some fine motor issues we want to get taken care before hand writing 'counts.') And I just can't get over the cost and what is not covered. I think you're amazing. I think Finny is amazing. We love you.

mjs45 said...

What an incredible blog. You've educated me. HUG. Sharing this with people on Facebook and twitter.

Michael J. Sullivan

Kari F. said...


I love your blogs; they are insightfully true and beautifully inspiring.

Glad I am not alone in this parenting soup.

Love ya,

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