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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...