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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...

Sunday, November 21, 2010

It Takes a Village

Every year for the last three years during the holiday season, while everyone is beginning to think about what they are thankful for, who they love enough to buy even the smallest gift, and as the excitement of the holidays begins with the $20 faux lit Xmas trees parked outside the drugstores, I am reminded of the sheer amount of human horsepower put behind my son's year to year progress.

November and December are IEP and IPP time, that is Individualized Education Plan and Individualized Personal Plan.  It's the time of the annual review of specific educational and personal goals written for Finbar and revised every year along with documented support, persons and agencies responsible for achieving them.  IEP's and IPP's are legal documents, mandated by Federal law for all persons with special needs.  Doing the necessary assessments, paperwork and meetings can be an exhausting and emotional process most years for all involved, me included. Finbar has his IEP meeting on November29th. I am always dreading the day, even though the meetings have usually gone well. It's just emotional and stressful.

For those who do not have special needs kids, think of  the IEP/IPP process as having to go sit at a table with your health insurance company same time every year and explain why you need insurance, what ailments or potential ailments that you need to be covered and convince them (at your expense sometimes) why they should cover these needs. And you can argue that by law they must cover you, but they of course will always try to cut corners and/or may simply refuse.  Now simply replace the "insurance plan" with "education and independent life skills plan" and you have the IEP/IPP process.

Also at this time of year, by December, I wonder why I am so spent, and then I remember, oh yeah - organizing Thanksgiving meal, attending school related holiday activities, planning two birthday parties (for my sons), buying birthday presents for my several relatives with birthdays this season, buying presents, buying presents, oh yes, and buying presents for the VILLAGE of people who help support my son.  That would be this year - one occupational therapist, one speech language pathologist, one special ed teacher, one classroom aide, two in-home behaviorists...and a teacher. I get off the hook a little this year because we don't  have an adaptive P.E. teacher or multiple rotating classroom aides.  When it comes to the hoard of folks who have surrounded my son each year, I take my husband's wise words to heart, "you can't say thank you enough times."  So presents it is.

Over the years, I think back to certain people who have worked with my son, and I am so grateful for their intervention and presence and dedication at much needed times.  We've been lucky. So many families become so frustrated with the revolving door of people coming into their homes and working with their children. Alas many develop antagonistic or un-cooperative relationships.  Some parents hear an "expert" telling them what behavioral problems their child has and so the parents resort to denial.  Well, that can't be good for anyone especially the child.  But  I have always treated "Team Finbar" with welcome arms, respect and gratitude, no matter how exhausting the scheduling. I believe this village of people over the years has rallied around my son, first and foremost because of his charisma and charm, secondly because I embrace their presence and thirdly because they are well, good human beings.  Here is a shortlist of significant accomplishments that talented people have drawn out of my son:

- Becky got Finbar to do his first pretend play putting out pretend fires around our house
- Becky also got him to engage in back and forth play by having him color a huge piece of plywood that they used hours on end as a car ramp.
- Sarah got him to refer to himself in first person instead of third person "Finbar"
- Sarah N. got Finbar talking to other children
- Serena got his gross motor jumping and climbing skills kickstarted.
- Emily made Finbar make his very first friend.
- Kristen made me feel like I was a good mom :)
- Lorie whispered in my ear on more than one occasion to advocate for Finbar when I was too scared to. She is always on the lookout for him.
- Jeanette got our family going to church again and became a nice mom friend who gave me mom advice.
- Josh taught Finbar how to act "like a cool guy"
- Cece was Finbar's girlfriend
- Jen showed us that Finbar could make it in Sunday school with the right support
- Cat taught Finbar how to put words to his feelings; Shilpa carried on that task
- Jenna got Finbar to dance with his preschool classmates
- Amber took care of preschool things for me/him when we needed her to without me even asking
- Miss Robbins fully includes Finbar and doesn't make me feel like my often disruptive child is unwelcome in a mainstream classroom
- Mrs. R is helping Finbar learn to play "kick" (soccer) at school with the other boys.
- Emily is available more than she needs to be for someone with such a busy schedule. She is determined to teach Finbar how to play nicely with other children. She cuts him no slack :)

There have been many more villagers over the years.   Pediatricians, autism doctors, naturopaths, specialised therapists.  Some are the same cast of characters that any child would have in his/her village - devoted understanding grandparents, crazy aunts (you know who you are), Nanan, Goomba...and other mothers (and fathers), especially mothers of neurotypical children from playgroups, school or the neighborhood, who have never judged or excluded Finbar (sadly there are many who have).  And lest I forget the dozens of mothers of special needs children who have talked openly with me on subjects that most parents never dare to. And then, there are even the teachers at Declan's preschool, sympathizing with me.  And finally a host of teachers of extracurricular activities who worked with Finbar's limitations so he could be included (thanks My Gym and Kindermusik!).

I realize as I look back this year, a particularly important triennial assessment year when his official diagnosis of autism spectrum disorder is reassessed, that I and Finbar could never have come this far without them.


PS - I forgot to include my husband. Kinda goes without sayin', he is there all along :)

Wednesday, November 10, 2010

Colorado Rocky Mountain "Hi"

As I sit in the Eyeopener Coffee shop in Niwot, Colorado sipping a large chamomile tea (it's about 40 degrees outside), I marvel at how little I have to do in this moment. Yesterday by 9pm, I felt that I had moved mountains, never mind landed in the midst of them and the wintry weather they bring.  Finney and I are on another "adventure".  "I am going to a doctor to get a massage, but I am not sick and I don't have a broken arm or anything", Finney explained to the folks on our plane who marvelled at his articulation.

And as last night I hollered in the rear view mirror at him once more to sit up straight in his backless booster seat and to stop asking me when we would get to the hotel, I squinted hard through the windshield of my rental Hyundai trying to read blurry highway signs, stressed to the max and pitying myself for the lengths I go through to give my son a chance at normalcy.  As fatigue and worry about being lost on a busy dark highway set in, I thought, what the heck am I doing? Last time we were here it was a disaster. What was I thinking?

I admit that it may seem extreme and perhaps desperate to fly to Colorado on my own with my son, staying in a cheap motel and shuffling him and myself to 3 days of treatment, multiple appointments a day, and paying big no-covered-by-insurance bucks to a Naturopath who reassured me a few weeks ago that "the good news is that we can get him back."    It was music to my ears as I explained to her that after we did the initial Brain Integration Therapy with her, Finbar was completely normal for 2 weeks, like we had never experienced. BUT, I explained to her something had gone terribly wrong. A switch was flipped after those 2 weeks and everything seemed to have short circuited and has gone awry since then.   Then the doctor confirmed my hunch without my even mentioning it. The chelation we did following the BIT set off something, likely moving metals in his brain around, which had altered the good she had done. But she said "I can get him back, I have seen this before." Phew. Just have to get our butts on a plane, spend some more dough on this child and all is well.

I should be used to it by now. We have done two other similar trips for therapies.  Costs a lot of time adn money, but how do you put a price on opening up neural pathways that allow your child to express love for others, jump off boulders fearlessly, tolerate the crunch of an apple and write his name?  As I drove white knuckles through the sleet in the dark trying to find this podunk town of Niwot, full of guilt for hollering at Finney too much during the tired drive, lost on I-25, I thought - ya know, if he had cancer, there would be no question I would travel to the ends of the earth for any remote chance of curing him.  And so I embraced my stress and pushed aside any worry of skepticism for what I was doing for him and gave him a big hug when we reached our room.  I snuggled him tight before collapsing in the king bed next to him and reminded myself when I was awoken by his tossing and turning umpteen times during the night that I knew what I was doing was right.

So here I sit, 10 minutes until the end of Finbar's 4th hour of therapy today, relaxed.  He has done quite well all things considered - not easy for any 5 yr old to lie on a table for 4 hours in one day. 3 hours tomorrow, 2 the next and then a flight home on Saturday. I wonder what he will be like in 3 days..I shudder with both dread and excitement, depending on the outcome.  Right now I don't care, I have my chamomile, my peace and when I pick him up in 10 minutes, we plan to go hot tubbing at the hotel. It is going to snow big tomorrow too. Yes, quite an adventure :)

Postscript: went hot tubbing, made dinner in our room (mac n cheese, PB&J, gingerale and OJ mixed, and left over pizza for mom), played many rounds on the Leapfrog Explorer, Finbar drew in his "journal" and played photographer and now we are having snacks (waffles and more PB&J) before bedtime while we watch Kipper and chat.  Do I detect a hint of happiness and flexibility in him that was not there yesterday???

Saturday, November 6, 2010

More "G", "E" and space shuttle talk

My son fell in love again.  This time he did so at the park in front of several older boys from school.  And when within minutes of meeting her, he proclaimed his love for the (older) object of his affection, the bigger boys did as boys do  - they turned locker room talk on him and teased him.  Most kids tease and get away with it. Finbar doesn't give a hoot about what others think of him, no matter how big and tough they are, and he does not back down from teasing and bullying.  He, like many high functioning spectrum kids, has a very clear sense of right and wrong and justice. Kids with Asperger Syndrome often see life this way - black and white, absolutes of right and wrong, no grey areas, no loosey goosey - simply justice and fairness for all.  And Finbar thinks teasing is wrong, no matter what the circumstances.  So he had no problem calling these boys out for being teased..  He marched over to the mothers of the older boys who were chatting at a picnic table near me and proclaimed, "ATTENTION ATTENTION parents of those boys. THEY (pointing to boys across the park) are TEASING me! They are teasing me!"  At which point, I hurried him over to me to sit down and explain.

"OK, Finney, well you must have said or done something to make them tease you."
"Well, all I said was 'I love her', that's all I said and they teased me."
"Wait, you love who?"
"Who's HER (looking over in the direction of the group of kids i see 2 girls)
"I'm gonna go tell them that it's not nice to tease me."

Just then a girl, who I later found out is named Emma and is 8 yrs old, walked over to Finney.  Like an older sister she tells him it will be OK and tries to distract him.  Her friend, Louisa, joins them. I later find out that it is Louisa whom Finbar fell in love with and just as quickly forgot about. But it becomes apparent that it is Emma who has a fondness for Finney.  The next hour, she followed him around, twirling on the tire swing with him, explaining to him the facts of life, why the older boys were teasing him, why boys tease in general, patiently and kindly answering his barrage of questions and gently telling him that he was too little to understand.  She was so kind and sensitive, I found myself contemplating asking her mother for her phone number.

I watched as she then protectively chased after him as he hauled butt across the park to go tell the (much bigger) teasing boy that he needed to apolgize.  As I watched them running in the direction of the group of big boys, the 2 girls plotting how to protect Finney, I sat, held my breath and watched. A life lesson I suppose? I told myself.

He survived the confrontation. I soon after saw the mother of the teaser go chase him down and make him sit on a bench for a while.  I'm not sure why, but I think maybe she heard them taking it out on Finney over by the big tree or maybe the girls told her what transpired. As I looked at the kid stting sullenly on the bench, I thought, Thank God Finbar can stand up for himself, but one day he is going to get the pulp beat out of him by a kid like that.

I also reflected on how Finbar only likes to play with girls. Not do or play with girl stuff, but play with and talk to them.  I guess girls are more patient and apt to answer his probing questions.  And they talk a lot and are more cerebral like Finbar.  Boys just shrug his constant commenting off.  And the older the girls, the better for Finbar too. He is right at home and vice versa with girls of about 8-10 years old.  That happens to be the level at which he tested cognitively.

At a certain point, "G", the love of his life came to the park to play. She joined in with my kids and 8 yr old Emma. Finbar is clearly smitten.  When "G" arrived, he quickly and plainly informed Louisa that he still loves her but "G" is the one he is going to marry "Sorry", he says, shrugging slightly. Luckily, Louisa does not seem affected in the slightest.

Later he tells Emma that he knows another Emma who is younger. Emma asks "is the other Emma pretty?", giving her feelings for him away for a moment.  To which Finbar, completely oblivious to the true meaning of her question replies "YES, SHE IS VERY VERY BEAUTIFUL. SHE HAS BEAUTIFUL HAIR and EYES."  Older Emma replies, "Oh." and soon thereafter departs, without so much as a wave goodbye from my son.

Boy has he got A LOT to learn about shared perspective, you know, the intuitive thinking that allows us to read other people's thoughts and feelings. He is going to get beat up over a girl and she will probably never know it.

He sees "G" again at the park the next evening. At some point, he announces again that he is going to marry her. Later, getting ready for his bath, he asks, "Mom, how can I get 'G' to marry me?" And without waiting for my answer replies, "I have to be REALLY nice to her right mom? Then she will marry me, right?"  I reply, "Yes, but you have to be nice for a very long time until you are older and have a job and can support her and stuff."

In the bathtub he announces, "When 'G' comes over to play on Sunday I am going give her a bunch of flowers, cuz you're a girl mom and YOU like flowers. So that's it, I am going to go out and get a bunch of flowers to give to her when she rings the doorbell."

That was Friday night. Today on Saturday, Finbar decided he wanted to go spend the night at his Grandmother's.  He forgot about his playdate tomorrow with "G".  Boys.

Later as he was going to bed, he asked me to lay down next to him to count the planets on the solar system that hangs above his bed. We counted 7 planets, and I reminded him that he and his brother had knocked a few off. To which he replies, "Poor little Pluto got kicked out of the solar system. When I grow up and am a space shuttle pilot I am going to fly to Pluto and drag it back to Earth and put it on Earth's orbit. I am not going to even call it a dwarf planet....But then, poor neptune will be the last planet and it will be kicked out of the solar system. Hhhhhhuh. Good night mom."

Coincidentally, knowing that Discovery was going to launch this past week, on Friday he drew a picture of the space shuttle and asked me to write "Thank you astronauts for launching the last space shuttle" and he signed it.  And we mailed it to Kennedy Space Center.  Mission accomplished.

Finally on a side note, NASA has a "face in space" program whereby you can upload a picture and your name to be flown into space on the shuttle missions. I did this for Finbar for the most recent Discovery mission. And yes, it was the photo of him in his Pilot costume :)

Wednesday, November 3, 2010

The Little Pilot

It is so hard to get Finbar to look at a camera, but in his pilot costume he is all smiles.

Giving a pilot's thumbs up took a little more thought..
Well this Halloween, I was once again reminded of Sudama's (see post on Shamans) assessment of Finbar.  Finbar hates dressing up. Especially for Halloween. Up to this point, he has never worn a costume of any kind.   This year was different however (for me). He is in Kindergarten now and there would be a whole-school parade in costume around our neighborhood on Friday the 29th.  I cringed at the thought of my son being the only child out of 300 kids not wearing a costume.  He could care less, but for some reason that I cannot explain, I cared a lot.  With much hope I purchased a pair of black pajamas with a glow in the dark skeleton painted down the front. . I thought OK, they are pajamas, not a costume. Maybe he will buy this story. Well he did, somedays. Other days he said he would think about wearing the skeleton.  I walked on eggshells for weeks each time the subject came up - "Finney, what are you going to be for Halloween?" someone would ask. "I'm thinking about it, maybe a skeleton, maybe not." he would reply. 

Then one night 6 days before Halloween, "Mom, I've got it! Can you make me an airplane costume for Halloween? I want to be an airplane."  Of course, why didn't I think of that? "Well Finney, I can't make you wings and stuff but how bout an airplane pilot costume?" (Amazon MUST have one, please dear God, gotta get online NOW).  Glee on his face at the suggestion that he would be a pilot.

$35 later, the order was placed just before midnight on Sunday and I waited.  The parade was on Friday.  The package was supposed to arrive latest on Friday, which would be too late. Well as luck would have it, I drove around at 9pm on Thursday night from Kmart to CVS to CVS looking for a Mummy costume, which Finbar had decided would replace the no-show airplane pilot costume. Didn't find a mummy, but did find a Hippy costume for myself to wear to Declan's preschool Carnival the next day :)  At least my trip wasn't for nought.

And so Friday morning comes and I report to Finney with much trepidation that I have had no success on the mummy thing.  In a rare flexible moment, he wears the skeleton, thankfully.  8pm Friday 29th , last UPS delivery of the day is none other than the Pilot costume.  I watch Finbar open the box, his body shaking and jumping with excitement, yelling "it's here!! it's here!! my pilot costume is here!!!".  The smile, the precious, joyful, gleeful, indescribable smile on his face as he took the costume out of the box.  "Mommy can I sleep in it, please please?  Uh, on second thought, I'll just sleep with the cap, I don't want my fabulous pilot costume getting wrinkled. Please hang it up mommy so it won't get wrinkled."

For the next two days, about every hour "Mom, is it time to wear my pilot costume and go trick or treating?".  Finally the moment arrives.  He put on his costume and I just thought "he's so beautiful and adorable and he is just SO happy right now, I really wish he would become an airline pilot."  It was a sight to behold...this little pilot skipping, hopping and chattering incessantly away down the sidewalk, describing in great detail each candy he acquired and how he picked it, explaining to those who had not noticed the wings on his uniform that he was not a ship's captain but an airplane pilot. He was in his element, on Halloween.

He plans to wear that costume for the foreseeable Halloweens, perhaps right up until he gets his real Pilot uniform.   I have no doubt he will.

Monday, November 1, 2010

Seasons Come and Seasons Go

I was reminded of this saying as I walked around Zodo's Bowling and Beyond, frustrated with Finbar's lack of coachability in that moment and feeling a bit wistful thinking how very much I would  like to find an activity that he LOVES so much that he will not give up on it, that he will allow himself to be coached by someone, that he will respect an adult and do what he is told.  I had truly hoped and thought that joining the Youth Bowling League, something that he in a very rare case asked US if he could do, might just be THAT motivating to him.  But just prior to that moment Finney had yelled at me that I was bossy, and had already sent one coach walking away in frustration as he tried to talk to him. I began to have doubts that bowling was IT.

It is difficult to describe the feeling I had just then, and have had time and time again over the years as I endeavor to open my child's linear mind and expand his's just not a fun feeling. It is an uncomfortable place to be as a parent.  That place where you watch your child and yourself time and time again, try and give up, try and give up, try and give up, try and fail, and finally, in the end just not try at all.  No resilience. This is the hallmark of an autism spectrum child.  They simply cannot handle the slightest pressure, failure, or demand.  It is a downward spiralling pattern that I caught a glimpse of at the bowling alley as my husband and I repeatedly watched our son throw the bowling ball over his head down the lane in defiance. This because we had tried to coach him to use the great 5 finger hole training ball that the coach had brought over for him at our request.  He was in effect saying "f - u, I will not be bossed around or coached, I am doing this on my terms."  Sigh.

The previous weekend, which was the first time he bowled in the league, he had done a fabulous job, scoring over 100 and taking turns nicely with an older boy he shared the lane with.  He had been high fiving his coach and doing a bit too shamelessly his victory dance with each strike or spare that he bowled.  I thought, wow, what a great confidence builder, hooray, perhaps we have found his niche.  As I chatted away with the League organiser, a mom whose daughter competes and wins scholarship money in bowling, I pictured our family travelling to Los Angeles and Vegas for meets with Finney. I thought about buying him his own bowling ball for his upcoming birthday. I pictured him hanging out with other junior leaguers like the 14 yr olds that were competing a few lanes over.  I thought, this ain't all that bad, this bowling thing.  At least if I can't hang out with the soccer moms on Saturdays, I can have a beer and slice of pizza while I watch.  And they won't ask me to volunteer coach or referee :)

Then today.  Oh well, I thought. Seasons come and seasons go.  First  there was the Gymboree class at age 9 months.  Why won't he stay in the circle and listen to the clown singing and telling stories? I thought.  Instead he would just crawl away and roll balls around the room incessantly.

Then there was My Gym.  Why is he freaking out whenever another child touches him? Why does he hate the ballpit? Why won't he clap his hands along wiht everyone else? When I realized that I could no longer take him there, shortly thereafter his pediatrician mentioned the "A" word.

So, eventually we try Kindermusik. Probably our best run at an enrichment activity, thanks to the very easygoing teacher and the free environment.   I recommend Kindermusik for any child with special needs. It is structured, but there is a lot of freedom within that if your child is not a rule follower. Sadly, it was at the point where Finbar could most benefit from this program, that is, when he went  to the classes on his own, that his behavior was not conducive to a productive learning session at Kindermusik.  So Kindermusik too came and went.

After another failed stint at My Gym, I gave up on extracurriculars for about a year.  Finally earlier this year we tried Karate.  The coach was so so so very understanding and just a great coach.  But Karate is no nonsense. The Sensei has the authority.  After Finbar's first lesson the coach, who had forgotten that Finbar had autism, said to me, "Is he in Kindergarten yet?"  "No" I replied.   "Good", he said, "because he needs to learn how to listen to authority before he goes to Kindergarten. This will be really helpful for him in that way."  "Great", I thought, "can't wait for you to teach  him to do THAT."  4 weeks later he sent my first month's tuition check back with a note in the memo line "we tried".  Yes, we tried. And failed. AGAIN. Perhaps if I sell his uniform and karate DVD on ebay for a few bucks I will feel better.

After Karate, we lucked out a bit. After the book "Horse Boy" came out, I decided to get Finbar into riding lessons. A therapist's mother agreed to give Finbar lessons. He stuck with this for about 6 months, but did take a break at one point. We had to quit after his lesson horse died. I am currently looking for a therapeutic program for him to join. He has asked to do lessons again. Fingers crossed.

In spring, I tried to coax Finbar into doing an adaptive baseball little league. It is a fabulously run non-competitive program. They get uniforms too.  He would have nothing to do with it. "I don't want to try it, I can't hit a baseball."  He, like many other nerdy kids is not sporty and coordinated.

I signed him up for one art camp over the summer. Taking a big risk to have him go it alone.  It was just 3 hours a day for a week and the theme was outerspace and planets, so I figure he would be motivated.  He did fine apparently.  I continue to try and find an art program that would suit him, one that has an understanding teacher and less than 10 kids.

It is soccer season now.  Well, let's just say "fugghedaboudid".

Another program he started last winter was a Wilderness Youth Program. 3 hours a week of outdoor exploration at local beaches, deltas, reservoirs, parks and such. At first he LOVED it. I thought Eureka, this is IT. He thrives in the outdoors.  Fast forward 6 months and he is being teased and bullied and quits.  I can't blame him for wanting to quit. Guess that wasn't IT.

Last week, I found a new program in town that was offered an Engineering with Legos camp.   The owner has a son with Aspergers and was very very encouraging.  She offered to be at the class while the teacher led it. Even said there was no need to have Finbar go with an aide.  I hung tight, bit my tongue, crossed my fingers, said Hail Mary's, "Please God, please please please let him enjoy this and do well."  I was not hopeful as I left Finbar in the class, hurling insults at a boy who had started playing with a Lego thing that he wanted. But I left and had my husband pick him up, so unable was I to take the bad news.  Yes, Bill confirmed.  Not good. Pushing and shoving other kids. General rude behavior. I am still waiting for the owner to call me back and let me know if he can return. I am not sure he should.  Seasons come and go. Sigh.

And so here we are. Zodo's Bowling and Beyond Youth League. We survived the second day and will go back for a third round.   I did learn one thing. I cannot coach my son (yikes, I AM bossy). I am OK with that. I think he is MORE than OK with that.  If bowling doesn't stick, I am not sure what to do....I suppose there is violin, piano, gymnastics....I try to tell myself that Bill Gates and Michael Dell probably did not have many other interests outside of computers.  Wish I could find him a web design class...

Thursday, October 21, 2010

Ode to Desks

I picture buried under a few years worth of mundane city trash piles of discarded school desks.  Or maybe old desks are warehoused in school district mobile storage units collecting dust and cobwebs.  Or better yet, perhaps these now disrespected former tools of education have been shipped off to third world countries for use in one room village schoolhouses. 

Where have all the school desks gone....and why?  I find myself pondering another topic due to my son's situation that I would probably not have considered were it not for his sensory issues...

When I was visiting umpteen private schools this time last year searching for a good Kindergarten fit for Finney, I visited a very traditional Catholic elementary school in town.  As I toured the school and its long hallways with extra high ceilings, thick stucco walls and solid wood floors, memories of my 13 years of Catholic education came flooding back. The familiar feel of a cold draft in the hallways, the echo in the indoor auditorium, the genteel priest, the lack of fanfare on the walls and in the classrooms, the statues of the Virgin Mary, and the quiet soberness in the air.  I had forgotten how different such a school is in a town of mostly "progressive" educational institutions.  But it felt like home to me, safe, secure, somber.

I recall the deacon who was showing me around explaining to me that he had just this past year "modernized" the classroom setting and teaching method by getting rid of desks and chalkboard teaching and organising the classrooms into "learning centers".   I remember thinking, wow, it took them THAT long to catch on to the way every other school was teaching these days? Not impressed.  I recalled such boredom in elementary and especially, high school, sitting at a desk trying to pay attention to the teacher, praying not to be called to the chalkboard, all the while being passed notes from friends because we could not talk while at our desks.  "Learning centers", yes, that made sense to me. Engaging and cooperative - fun, not boring I thought.

Fast forward one year and my son is having a LOT of trouble learning in the learning centers and if we do not find a solution to his problems soon, I do not know what we will do.  Why is he having such trouble, I have to ask myself?  Well for starters, learning centers are chaotic.  Picture twenty 5-yr olds, splitting into 2 or 3 groups, moving from floor carpet squares to chairs, chairs and tables that are squeezed into a small area, chairs that screech across the floor as they are moved. The students don't have desks with all the supplies they need to work with right there, so they wander around the room finding the glue stick box, the pencil box, the crayon box, etc.  All the while, kids chattering away. No order.  No quiet.

So the kids take the expected 5-10 minutes to settle down in their learning groups.  I, a parent, now acting as a volunteer "teacher" one hour a week  to one of these groups, attempt to talk the children through the concept that they are supposed to learn and their requisite activities, raising my voice over the noise of the other kids in the other centers, and asking them to turn their little bodies in my direction to pay attention.  My son is lost within 2 minutes. Too many steps to recall for his ADHD type mind amidst the noise.

While we are working, there are other kids moving about the room, some doing free choice on the floor, others choosing a different workspace because there may not be enough room for their taste at the group table, others walking around to find supplies. Voices come and go. I patiently go around the table offering help and keeping kids on task.

Finbar succeeded the first week in efficiently completing his work in this setting.  Each week thereafter his behavior and ability to work in the group setting has declined to being completely out of control this week.  I'm not making excuses for my son. There is ONE girl in the group who can completely work independently and finish her work with virtually no assistance. But I must say that the other 5 children get distracted by the stuff going on and have to be prompted to continue working every few minutes. Finbar is the worst of them usually. His sensory system simply cannot process the background noise or filter it out. He has told me this.  He consequently can't think straight, forgets what he is supposed to do, feels overwhelmed and helpless and has a breakdown. 

The close physical proximity of the other children is a challenge as well.  He is tactile defensive, so his sensory system fears invasion of personal space, so he is tensed all the while worrying about being touched inadvertently.  Sometimes the fear is so great that he kicks or shoves another kid in anticipation of being touched.  If he were in a desk, he would not be close enough to kick anyone and everyone's personal space would be clearly defined.

I am not an educator so I am sticking my neck out a bit here - But why is this the new BETTER way to teach? Where is the benefit over desks? What happened to order and quiet in the classroom?  Can we really expect 5 yr olds to learn on the floor and in groups in such a distracted manner?  I can't help thinking that Finbar's sensory system and brain would function much more attentively in a hard, wooden desk FACING the teacher and learning materials (not another child across the table from him), his and everyone else's personal boundaries clearly defined, all work materials and personal belonging in one spot within reach, and the focus being in one place - a chalkboard.  Now the chalkboards are used to hang up class artwork and pictures of the kids.  And in this setting, every child would be expected to STOP TALKING AND DO YOUR WORK. Peace and quiet - ahh.

I vividly recall my Kindergarten days. "Take out your phonics books please" Mrs. Bahan would say. Everyone heard, no need for her to raise her voice. We were quiet and sitting still in our desks. We all did what she said when she said it in synchronicity.  She proceeded to show us the lesson on the chalkboard, sometimes having one or two of us go up to practice on the board. Allowing time for questinos, we would raise our hands from our desks. Then we took our pencils out of the little slot carved in the desktop for such a tool and did the requisite exercise in our very own phonics textbooks - what happened to textbooks?  And the teacher REQUIRED us to work QUIETLY. If you were a disturbance to the class work, your desk was put up front by the teacher's desk. How's that for focus?

What was so wrong with this desk learning model I wonder?  Don't we all go to the library or a quiet place to read and learn?  Even at Starbucks you see everyone studying with headphones on blocking out the background noise. And unless it is a study group, you don't see strangers studying around the same table at a coffeeshop invading someone's personal space.  When I am at home on my PC working, I don't pull up a chair next to my husband while he is working at his desk, saying "Hey, let's learn and engage together".    If adults need quiet and space to study and learn, why on earth would we expect 5 yr olds to learn BETTER without quiet and in such close proximity to each other?  They are not MBA students.  Arent' we asking a bit much increasing class sizes to 25 or 30 kids and then expecting teachers and kids to maintain calm and focus in such a configuration? It's no wonder there is a seemingly increasing number of kids who have "ADD"  and "learning disabilities" identified at school. But is that a fair assessment when we put children in this kind of learning environment?

I would like to emphasize greatly, that this is NOT ANY teacher's fault.  Finbar's teacher is executing the educational format common in today's schools.    My theory is that "learning centers" are an excuse for accomodating budget cuts to public schools.  You don't need to buy textbooks to fill desk cubbies.  You break the larger classes down into manageable pieces for the teachers and pray for decent parent volunteers to take on a learning group or two.  And I suppose you can cram more kids into the classroom if you don't have desks set up. And in today's world of increasingly loose boundaries the idea of learning centers gels with the out with the old and dull, in with the new and groovy mentality.

I spent my whole school career at Catholic schools sitting in a desk.  I graduated with Honors from a top MBA school, so I certainly did not suffer from a lack of learning centers. Perhaps this old Catholic school had it right.  They were willing to work with Finbar. Ultimately I did not send him there because the school's test scores were quite low - I believe due to an outdated curriculum, not the desk teaching model.  But if that school still had desks, I might just be re-visiting it at this point.  I am thankful for St. Francis Cabrini, St. Pius X and Ursuline Academy for their desks :)

Saturday, October 16, 2010

Decky Doodle, Child of Grace and Finbar's Little Bother

Always smiling
Declan chose to eat his "spwinkle" donuts naked while it was snowing nonstop outside
I have been meaning to write about my second child Declan, affectionately known as Decky. He is 3 1/2, exactly two years younger than Finbar.  Decky has many nicknames, which might give you an idea of the character that
he is. Here is a partial list of his nicknames:  doodle poodle, snuggle bunny, fuzzy wuzzy, fuzz bucket, Tank, Survivorman, snuggle bug, snuggly buggly, #2, the lil general, the two footer, the Destroyer, the Wildman, Energizer Bunny, Mr. Independent....

But the nickname by which Finbar refers to Declan is "My little BOTHER".  And that is the term he uses to introduce Declan to complete strangers at any chance he gets...."Hi, I'm Finbar. And this here is my little BOTHER (emphasized) Declan. You see, I call him my little bother instead of my little brother because he bothers me a lot, but sometimes he is nice, but mostly he just bothers me and makes me mad, etc, etc, etc."

Declan shares Finbar's fascination with throwing rocks in the lake for hours on end

Poor Declan takes a verbal, emotional and physical beatin from Finbar on a daily basis, but he can dish it right back to his older brother, all the while with a smile on his face.

I'd like to dedicate this entry to Declan's new preschool teacher, who has come into his life at just the right time and has been so supportive.  You see Declan is an energizer bunny, and his new teacher's arms are a great receptacle for that energy - her enthusiasm matches his.  At 3 yrs old, he needs another pair of loving arms to welcome his energy because his older brother sure as hell does not welcome all that energy into his spectrum world... too overwhelming. 

And yet, it is that same high level of energy and zest for everything which Declan possesses that has been so instrumental in drawing Finney out of his autism and into Declan's world of play, imagination, motivation, celebration, music making, conversation and socializing. Were Declan a mellow yellow kid, I would be SOL and Finbar would have very little interest in playing with anyone.

But thank God for Declan, the child of grace...going back to the Shaman visit that  I wrote of previously.  After Sudama was through checking out Finbar, he walked into the playroom where Declan was sitting and asked me "what about your second child, anything I need to do?"  Declan said not a word. And almost telepathically, Sudama and I both looked at him and just shook our heads, "no".  Then Sudama just kind of nodded in agreement with me, saying "child of Grace".  No need there. 

Child of Grace he is. God gave me a gift in my autistic son. And then he saw me struggling with that gift and sent me a follow up gift in the form of the world's most forgiving, empathetic, intuitive, kind, intelligent, completely tough and confident baby brother for Finbar.  I truly believe in my heart that God sent Declan to be a teacher for Finbar and a refuge for me.    His profuse enthusiasm and affection, overboard at times, easily fill a room and fill a void in me and our family that was created in the early years when Finbar was very detached.  While Finbar is tactile defensive and gives me a stiff hug now and then, Declan ORDERS me to snuggle and spoon him EVERY morning as I am greeted with "Mommy snuggle" and a kiss on my forehead.  Throughout the day, I am ordered to repeat this event. No hug is too tight for him. Bliss.

When Declan was born, I had just realised that Finbar had autism and during the first 3 months of Declan's life, I tried not to think about what was coming down the road with Finbar. It was a dark time and I know that I did not completely bond with Declan during those first few months, so depressed and preoccupied was I. But when Declan was about 6 months old, I began to see that he had an extraordinary personality, like a prayer answered he snapped me out of my depression with this vivacious bold, personality.  He was a LOUD baby. I mean REALLY loud.  He would guffaw at the slightest prompting and so very loudly, his whole body shaking bald head to toe.  And he played drums with anything anywhere all the time.  He was extraordinarily strong and confident. A real go getter. Still is.  The first year of his life Finbar detested Declan's very loud gregarious presence..  

But I am convinced that no other sibling with no other temperament than Declan's would have been so beneficial for Finbar's progression into our world.   Declan is simply so bold, so confident, so in your face sweet, that there was no way that Finbar could avoid interaction with him. Another sibling personality would have shrunk back and given up on having any fun or sharing any love with Finbar in those early days. Finbar would ignore, push, shove, yell, bump, kick (still does) - but Declan's natural love and desire to be with his older brother and his self confidence in the face of his older brother's threats was too strong. Despite how badly Finbar treats Declan at times, Declan is fiercely protective of his older brother and will not even sit down to eat dinner without Finbar. And  Declan seems to intuitively know that Finbar requires a lot of leeway and most times he willingly gives it to Finney.  He is also so intelligent and clever that he can keep up with his older brother's verbal output and quirky habits.   So there is no way that Finbar can avoid interaction with him. Declan simply will not have it.

In view of all this, we recently got rid of the behaviorists. For 3 1/2 years we have had numerous adults spending umpteen hours a week teaching Finbar to play, and they did make progress.  But strangely, without them Finbar plays better and more with his brother than ever. And he seems to be benefitting as much, if not more, than playing with adult therapists 10 hours a week. Declan is leading the way most times, inviting Finbar into imaginary play...Finbar usually trying to assume control but secretly enjoying the play.  And in recent weeks, I have seen Finbar initiate the imaginary play with his brother too.  

In the end, they get frustrated with each other, they fight, they wrestle, they scream, poke, kick, hit.  It drives me nuts, but I am so grateful that it's that way instead of something else. Thank God for the little bother.

I live with Dory

I live with Dory from the movie Finding Nemo, you know the fish that had no short term memory.  Only thing is, instead of Ellen DeGeneres' voice, she has Finbar's.

Here is a sample of   "conversation" that occurs with my son on a daily, hourly basis.

Finbar:  "Mom, how many months until my birthday?"
Me:  "Remember we talked about this yesterday, you know the answer."
Finbar: "huh? well, uh, can you tell me again, I don't remember."
Me: (tensing up because this is the umpteenth conversation we've had like this)  "OK, RU listening carefully to my answer because I am only going to say it once?"
Finbar: ( has momentarily spaced out):   "uh, what did you say? .. uh, yes I'm listening."
Me:  "Your birthday is in 2 months...  So how many months is it until your birthday Finney?"
Finbar: "uh, 2 months. (pause)  But did you say 2 months mom?"
Me: "Yes."
Finbar:  "But how many days is 2 months mom?"
Me:  "I don't know Finney, about 60."
Finbar:   "60 days mom?"
Me:   "yes finney, 60 days."
Finbar:    "But are you SURE 2 months is 60 days mom?"
Me:  "Yes, I'm sure 2 months is 60 days."
Finbar:  "So my birthday is in 60 days?"
Me:   "YES Finney."
Finbar:  "So 60 days is 2 months mom? My birthday is in 2 months?  That's 60 days right?"
Me:   "That's what I said Finney. So how many months until your birthday?"
Finbar:   "Uh, did you say two months mom? You said 2 months right?"
Me: "Yes Finney."
Finbar:   "Oh. And two months is 60 days, right mom, right? My birthday is in 60 days then? "
Finbar:   "Oh, OK mom. (pause) Mom, my birthday is in 2 months."
Finbar: (a little quieter now) "Mom, my birthday is in two months"
Me:  (silence)
Finbar: "Mom, my birthday is in two months"
Me: (silence) 
Finbar:  "Mom, my birthday is in two months. Mom, why aren't you answering me mom? mom? MOM!"
Finbar:    "I'm ready mom.  Why do you always get mad at me? I was JUST asking a QUESTION."
 Me: (in my head) "Just keep swimming. Just keep swimming. Just keep swimming, swimming swimming. What do we do? We swim, swim, swim. ...are you my conscience?". - Dory

There is much research surrounding the link between Autism and Alzheimers.  Some liken Autism to the Alzheimers of children.  Both appear to be caused by brain inflammation.  We will be seeing a neurologist about this very soon.

Sunday, October 10, 2010

His World

Bright children are fascinating. I have to be honest and say that there are children who have an average intelligenc and they are not really fascinating.  But the really bright ones are.  I wonder what kind of child Bill Gates was. My son is super bright.  He is fascinating to most adults, most are captivated by his articulation, charm, curiosity and wit.  Too bad other 5 yr olds are not as fascinated. One of the fascinating things about my son is watching him make up his own entertainment. In his own world, in his mind, where he lives a lot.

Lately, Finbar has been "stimming" a lot.  Stimming, or self stimulatory behavior, is a lot like chewing on your pencil, picking your nose, shaking your knee when sitting....its usually an outlet for some underlying anxiety, deep thought or nervousness.  Stimming is a key factor in autism. When Finbar stims, he stims with his entire body.  He kind of grits his teeth, eyebrows pursed, making some humming noise, fingers flicking, arms stiffly shaking up and down, legs stiffly jumping up and down and around.  It is very medicine doctor-like.  When he is in this trance, he doesn't appear to hear you.  Time and time again I ask him what he is thinking and feeling when he does this and he can't remember. Or he will consistently say that he does that when he is excited.  Anyway, I find this way of tuning out the world fascinating to watch (and disturbing as well).  It is so unusual - where does it come from?

Other ways Finbar checks out of this world are amusing. Here are some things I caught him doing recently:

- raising the pump lever of a bicycle pump to different heights and watching how fast or slow it went down when he released it.
- sailing a model wooden sailboat in a 6 ft long gutter fillled with water for 2 hours
- filling and emptying the laundry sink repeatedly for more than an hour to watch the "black hole" or whirlpool of water go down the drain
- filling the drain of same sink with first a popped balloon and its string, and then stick after stick after stick.
- turning on the outdoor faucet and watching the water flow out, all the while stimming while his shoes got soaked.
- walking around the house "flying" a jet plane for an hour without saying a word

I wonder, do other children engage in this sort of self entertainment? Dunno.  My other son does not do these things. He plays trains.  Other kids seem to build legos and play Leapfrog.  But that is less interesting to watch...

Sunday, October 3, 2010

More "G" and Space Shuttle talk

Just a quick follow-up on previous blogs topics.  We've had two more encounters with "G" since posting. First was at an adult birthday party.  Long and short of it was at the end of the evening I found Finbar and "G" playing quietly (and he looking very content to do so) in a bedroom with what appeared to be a mountain of pink toys.  When i asked him later what they were doing he replied, "Uhhhh, we were playing with girl toys. It was sooo boring."  But he happily stuck with her. What a guy.

Last night "G" came over to our house with her parents.  I caught Finbar just ga ga staring at her from afar several times.  Poor sap.

Finally, I watched a documentary called "In the Shadow of the Moon".  It is the story of the astronauts who went to the moon from 1968-1972 told in their own words during interviews.  These were fascinating and amazingly brave, highly intelligent men, who are all now about 80.  Real American heroes.  I experienced great relief when more than one mentioned that as a child all he could think of, all he wanted to do, was to fly.  Model airplanes, rockets, the works.  Buzz Aldrin was even known to be a bit obsessive about some scientific topics, talking endlessly about orbits and such.  I was immediately relieved to know that (as long as Obama doesn't shut down NASA entirely),  there still is hope that Finbar in fact, being of similar mind to these cool ole guys, will learn to fly and even become an astronaut or rocket scientist.  In fact, in recent days he and I have come up with his plan for learning how to fly. First, learn to read, write and do math. Second, purchase a flight simulator software package around age 8. Third, get into flying model airplanes around age 10.  Fourth, take flying lessons around age 11 or 12.  Finally, attend a commercial pilot school for college.  Space shuttle pilot...