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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 :)


Rebecca Royce said...

Beautiful post Jen. I think they had my IEP reevaluation every 3 years here. My Mom dreaded it. I'm sure all of the people in your life helping with Finny who you are so kind to thank are also thankful to have you to work with!!

Grimace said...

I think I am going to adopt that 3rd person thing. Ralph thinks that's kinda cool.

DanDoherty said...

A little late, but Happy Thanksgiving. That's a wonderful list of things to be thankful for!

finbarsmom said...

Goomba, so lovely to hear from you. You were on the list! We know your prayers and thoughts are always there1 We miss you. Finbar is going to try to Skype you. xoxo