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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

Thursday, December 16, 2010

Poop on the Butt is a Good Thing

(Warning: The following entry my be a little bit graphic for some, but it is a fact of life)
One territory that I think the majority of parents never dare to compare notes on, unless your child is advanced in this area, is when and how a child becomes fully potty trained - butt-wiping, pants (un)buttoning, night-time dry pants and all.  The whole kit and kaboodle. Completely done with any bathroom assistance day or night.  Parents of girls may say right now "what's the big deal?"  I sometimes think that I will still be wiping butts when I am 62 and they won't be my grandkids'.

The only parents who tend to share their experiences about potty training are the ones who are struggling and therefore, to whom I open up. I find this is a common reaction no matter what the topic. That is a gift of Finbar's autism.  It forces me to open up to others and share for example, the mysteries surrounding my son's potty usage, which provides comfort to myself and often other parents.  Still pooping and peeing is a particularly sensitive area and it seems the majority of parents just muck along, sometimes feeling clueless and not in control, but embarrassed to admit it.

With Finbar, I had three strikes against me already when it came to potty training: 1) he is my first child so I have no experience  2) he is a boy 3) he has autism (read anxiety, control issues and sensory issues to be specific). 

So to make a long story short, we got through pee pee training during the day by way of the autism behaviorists and school personnel pushing it (THANK YOU). Phew.  Pooping on the potty was a much longer drama, but I, finally at my wit's end last year, forbid anything BUT pooping in the potty on the day Finbar turned 5.  After holding it in for a week after his 5th birthday, Grandma was able to convince Finbar (did I mention that Finbar will do ANYTHING, even temporarily feign complete and utter normalcy for his Grandma?) to go and we were off to the races with pooping in the potty. 

Nevertheless, here we are  nearly a year into pooping on the potty and until last week Finbar was 1) not going poop without me or his father in the bathroom with him  2) not wiping himself (yuck).

This was just a battle I was not willing to fight right now.

The irony is that my 3 yr old is adamant about going poop "in pWivate" AND much to my dismay secretly goes poop and tries to wipe himself, only to call me in to fix his mess after he has "twied and twied" to wipe himself.  Put it to you this way, I have gone through umpteen mops and boxes of Clorox wipes due to this boy.

Anyhoo, I simply chose not to push Finbar to learn to wipe himself. I encouraged it when I could, but that was as far as it went.  So imagine my surprise when here, sitting at my PC last week, Finbar arrives at my desk, pants around his ankles, to calmly and sweetly announce that he went poop and tried to wipe, but needs me to check if any poop is still on his butt - as if he had been doing this for ages.  At which point he turns around to show me.  Well suffice to say that he needed a little more practice :0.

Whhhaaaa? I think. Where did this come from? For the previous 2 poops, he had in fact quietly gone on his own without asking us to go in the bathroom with him, but he did call us to wipe him. THAT was already surprising and I did not hold out hope that it would last. I didn't even really praise him for this because I was afraid that calling attention to it would cause him to regress.  But WIPING himself was a whole new world. A BIG step forward.  A world of Finbar trying to do something for himself on his own without whining for help or saying "I CAAAAAN'T.  A check mark on the Independent Life Skills list.

This kind of self motivation comes so natural and is so innate to most kids, such as my 3 yr old. It's "look at me mom!" "Look what I can do by myself!".  But for the child with autism, motivation is always lacking, always fleeting.  As I have said before, people with autism have very little resilience.

So I told Finney there was a little more to get off. Cleaned him up. A couple of days later, he went and wiped and didn't even ask for a check over.  I never did get the chance before he got in the tub to check how well he did :0.  Then today I think, wow, when was the last time he went poop? 3 or 4 days ago? The answer is, I really don't know.  I ask him and he doesn't know (doesn't remember - see post on Dory) but thinks that it has been a long time. Now what????

Speaking of poo, all is not exactly tied up with peeing.  Ever heard of Malem bedwetting alarms?  Finbar still wears nightime diapers.  This breaks my heart. He so really really wants to have dry pants at night.  We have tried EVERYTHING.  Very well meaning folks suggest "don't let him drink after 6pm". If it were only that simple.  Finbar's brain as we all know works differently and his sensory system works differently.  I am only just beginning to grasp that we may be looking at a longer term, enuresis problem. 

As I type, I just went to try and wake him (it is 10:30pm) as per his request every night when going to bed - "mom, don't forget to wake me to pee later."  I prod and call to him, but he doesn't wake. What's a mother to do?  I have in the past tried many times to pull him out of bed, take down his pants and stand him (hold him up) in front of a potty to pee. He has sometimes remained completely asleep while I do this. Rarely did he actually pee.  His brain simply will not wake him up to go.  We tried forcing it by taking away the diapers and thought well maybe if he wets himself a few nights he will get the point.  That was kind of like rubbing a puppy's nose in its poop on the floor. Poor fuzzball just doesn't get it.  The Huggies Goodnites website states that 5.7 million children in the USA wet their pants at night. Phew we are not alone.

So we continue to try and wake him most nights. Most nights he remains unwakeable (wish I could say the same for myself when my hubby is snoring LOL).  And now I have researched bedwetting alarms (can add that subject to my informal PhD studies in autism).  Who knew that there is a slew of alarms out there - wireless, plug in, wearable, bell and pad...they come in a variety of colors and ring tones.  When I read up on these alarms, the overriding comment from parents was that they work, but you basically have to sleep in the child's room for a few months so that you can help them get up, turn off the alarm, go pee and put on dry pants if necessary - and this sometimes several times a night and for weeks on end.  Uhh, no thanks. I decided to heed Finbar's pediatrician's advice "Don't get an alarm, all that will do is wake YOU up several times a night."  It was her opinion, and mine too, that the sensory connection between brain and body that is needed to wake up at night to pee is not yet developed in Finney.  So for now and perhaps the foreseeable future, it's Huggies Goodnites and a lot of $$ down the drain.

Monday, December 6, 2010

Post Colorado Update

"We can get him back" is what Dr. Pratt said to me (see previous post).  I am pleased to report, and also worried to jinx things and get my hopes up in writing this, that Finbar is doing much better since his second BIT session in Colorado.  There are certain somethings, certain moments, looks, words, thoughts emanating from him in the aftermath that provide a glimpse at what may be changing in his brain for the better.  He still bounces around almost incessantly and stims on spinning things (I am almost convinced at this point that there is absolutely no therapy or medicine that can change this) - BUT, there is a certain flexibility, relaxed demeanor and tone, longer periods of physical and psychological calm, and willingness to compromise and admit wrongdoing that is ever so subtly creeping into Finbar's repertoire of behaviors.  In the moment, when I am accusing him of committing a crime or insisting that he do things my way, and he quietly accepts in a soft tone with "Ok mom", in that moment I know that something has shifted in his processing of the world. That some new way of thinking is emerging. That perhaps he is able to take in more and deal with it instead of running away - HE CAN COPE.  I am also seeing more honest, more present, more REAL feelings and self awareness being expressed by him.  It is almost as if he is finally straightening up his spine, as strange as that sounds. It is like "OK, here I am, here is how I feel, just want you to know."   A few days ago, I heard him say to a behaviorist who was facilitating a playdate, "OK, let's stop talking about how we FEEL about coloring this (cardboard) playhouse and let's just color."    These things are markedly different in my day to day interactions with him. Still, he harbors much anger and blame, especially toward me, that rears its ugly head. He is still socially awkward at best. And he continues to get lost in repetitive loops and have uncontrollable outbursts, although much less frequently than 2 months ago.  But the difference is that when he exhibits these poor behaviors, his reaction to MY reaction is more regulated, accepting and within the norm.  So I am very hopeful. Hopeful that his increasing ability to cope and process emotion will lead to new behaviors and a positive learning curve and knock on effect. You will know that it is working if and when I board a plane to Boulder to get BIT training in the future - to be continued....

More on "G"

Well there has been no talk of marrying "G" of late, however there has been talk of sleeping with her :0  "G" came over for a playdate recently.  The two had so much fun that Finbar insisted that she not leave and instead "sleep in my bed with me tonite."   It is this very preciseness of speech and lack of social filters that results in many amusing moments with Finbar.  There is no "do you wanna stay for a sleepover?".   Rather, it is "I want you to stay and sleep in my bed with me tonite. You HAVE to, PULEEZ."  The irony of this statement is that  "G"'s father is Sicilian.  If this were another year and place, who knows what might happen if he got wind of my son's proposal to his daughter.

So of course I say "no" and politely escort "G"s mom and "G" to the door, Finbar all the while perseverating on having her sleep in his bed.  I am later told by my husband that unbeknownst to me, Finbar solicited his Dad for assistance in sneaking over to "G"s house to sleep in HER bed with HER, following up this plea with "shh, don't tell mom. You HAVE to help me Dad. You HAVE to." And he had a plan for how he and his Dad could do so. 

Daily fringe

The other day, in the middle of the day, I was pounding and breading a bunch of fish and chicken breasts with gluten free breadcrumbs to vacuum freeze, and I reflected on all the things I did that day and on most days that were what I call "fringe activities".   Fringe activities are things that I do or don't do that are a direct result of my son's autism.  That day, I had run over to a grocery way across town in search of raw milk and non dairy rice cheese - two VERY hard to find and very expensive items.  Here I was pounding meat because of Finbar's motor/chewing sensitivities and breading and freezing it because gluten free versions are hard to find and expensive (Finbar's entire gluten/dairy/soy free wholly organic diet is expensive and I estimate costs our family TWICE as much as a typical one).  Also that day, I had our third appointment with a Marriage and Family Therapist that I requested to evaluate Finbar and help me decipher and deal with his anger and emotional issues. Finally, I thought of the many kids and moms from school that were at the park across the street that day while I was at home concocting in the kitchen, and the fact that on that particular day, as great a social opportunity it would be for me and Finbar to join them, it was a much greater social risk to do so.  And so as I went in and out of the house putting groceries away and putting up Xmas decorations outside in plain view of these moms and kids, I, in effect, may have appeared to be, yet again, anti-social.  Ugh.

The IEP meeting

Phew and ugh.  A week ago was Finbar's IEP meeting and triennial review for his diagnosis of autism.  I was presented with a slew of test results and information that I have STILL not had time to read over and digest.  I am procrastinating on signing off on this IEP.  Speech services were cut, with a rationale that I am not sure I wholeheartedly agree with. And that was AFTER I negotiated.  Apparently because his vocabularly is off the charts, that means he doesn't need a speech therapist.  What about COMMUNICATING?, I ask.  You know, having a two way conversation, maintaining an appropriate tone of voice, choosing the right words to communicate thoughts....BUDGET CUTS. BANKRUPT CALIFORNIA. This is the result I thought. CUT CUT CUT.  So we compromised on speech services, but I am still not sure I am going to accept it. The most conflicting issue for me coming out of this IEP is the idea of first grade being a longer school day than Kindergarten;  however in first grade Finbar will have a classroom aide the same amount of hours he has now.  This means that he would have support person in class a smaller percentage of his total day in first grade (and of course, the school district would not have to increase costs by paying someone to stay longer - CUT CUT CUT).  The rationale presented "we don't want to create uneccessary dependence on an individual". To me that describes the art of being a GOOD classroom aide, not a rationale for cutting back on an aide.  To be continued...

His autism diagnosis

During this year's IEP, Finbar's diagnosis of autism was reassessed.  The ironic thing about having a child with high functioing autism is that you WANT them to get the diagnosis in order to get the school and support services, even if you REALLY WANT and can realistically hope that your child not to need the services. For an autism diagnosis, the child needs to be deficient in three areas: speech/communication, social and behavioral. And there are specific deficiencies in each of these categories that must be met.  The jury of testers SAID that Finbar almost was disqualified for autism because of his excellent speech skills - I beg to differ however.  He definitely has speech issues among others.  What I realised in this IEP is that if I, THE MOM, had not been brutally honest with myself and the testers on the evaluations and questionaires they had me fill out about behaviors at home and in public places, then Finbar very well might not have received his diagnosis this time around.  Time after time, the school staff rated him higher and better on most fronts (a relief) than his own mother did.  But I know him best. And I know that my son has autism and struggles a lot, and the sad, on-the-fringe irony is that I have to advocate for his diagnosis.  Whatever it takes.

The biggest plus of all this testing, was a confirmation expressed in several test scores, of what I and everyone who encounters Finbar already knows. The child is off-the-charts intelligent.  Sure, he is still learning to read by sounding out words and learning sight words like the rest of them in Kindy, and it is not as if he is a math savant at age 5. However, apparently his "general base of knowledge" and his ability to conceptualise things, along with his vocab, are way up there.  His mind thinks like that of a 16 year old, possibly older, but the test only went up to that age.  He nailed all the riddles the psychologist gave him, often providing her with the answers before she finished giving the riddle.   What this means, the psych told me and the teachers, was that some of the behavior we see may not always be due to autism, but in fact, due to giftedness that is not being properly engaged in class or elsewhere.  He just simply is on another planet (her words) in his mind.  The wheels are always spinning, ideas always churning, insatiable curiousity searching and mind cataloguing and documenting.  There are no true programs or accomodations for really smart kids in Santa Barbara public schools, and it would not appear that there is much to offer in private schools here either.  There is a gifted and talented program in upper grades, but with the current state of budget cuts, it is likely to not even be around by the time Finbar reaches the age. We will have to keep a close eye on how this affects his ability to learn and engage in a public school classroom. He needs to be in a math and science magnet school but there isn't one.  To be continued...