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Ohio, United States
My journey before and after bariatric surgery.

Wednesday, February 29, 2012

New to the journey - we're learning! 2/29/12

Since receiving a solid diagnosis for our nine year old son, Eli, in October 2011 of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified, an Austism Spectrum Disorder) -- on top of his previous diagnoses of ADHD, Severe Anxiety, and Tourette Syndrome, I have been flailing around trying to figure out the ultimate question.... What EXACTLY am I supposed to be doing???

There's an ocean of information out there to access...but in order to find what actually applies to your child, you need some guidance.  We are at least an hour and forty-five minutes away from the the Behavioral Clinic, Autism Center in Westerville Ohio (Columbus) where Eli received his eventual diagnosis last fall.  They have amazing resources, but after traveling back and forth to the Center and Children's Hospital all last summer during the evaluations, we knew we could not afford to continue the trek.  There just isn't enough money or sick/vacation time available to utilize their facility.  I sincerely wish we could!

We, of course, made immediate arrangements with the school and we have been extremely blessed with outstanding teachers for Eli's 4th grade year, as well as a Principal and School counselors, psychologists, etc. who are willing to go above and beyond to help Eli succeed.  His most difficult challenges in the classroom were identified and his 504 Plan was developed around that.  It is such a blessing to have a willing team to work with!!!  I cannot thank them enough! 

I also began to search locally, make contact with our local chapter of the Autism Society, talked to a few local contacts.... but I wasn't really feeling informed and connected at all.  It's been entirely overwhelming, and I really didn't know where to turn.

I remember once equating it with being on a rocking ship, while you're going through all the evaluations.  When the diagnosis comes, they say, "Yep, your son has PDD-NOS! Don't worry, there are a lot of resources out there!  Hope you can swim!" and then you're knocked over the side of the ship into this vast sea of information.  "Good Luck!  Let us know if you need anything!!" the professionals all yell from the ship as they wave and drift away.  And then you're floating, searching for something, anything that applies to you and your child and your family.  Sure, there's information everywhere!  As vast as every drop of water that makes up the ocean your floating in, but ... how does it help OUR FAMILY specifically?

After about 4 months, I stumbled across a man's blog on the internet about the daily challenges his family works through with their Austistic 13 year old son.  I read and read and read...I couldn't stop!  I then found another family's blog about their 8 year old son, and I began to recognize some major similarites between their child and our Eli!  I got so caught up reading their blog the other morning, I nearly made myself late for work!

For the first time in a long, long while, I am finding comfort and hope!  I never tire of the encouragement I feel reading the accounts of their daily lives working with their children, exploring & learning from each new challenge they face as a family, learning to recognize triggers, and techniques to combat sensory overload and help their precious guy thru the tough stuff when their little mind go haywire from their day.  Everything THEY go through enlightens, encourages, and educates ME! 

I've already learned a few things that I'll be trying with Eli, and I was astonished to read about one technique that is routinely used with autistic children that Eli himself has already developed as a coping strategy and incorporated it into his daily morning routine, and none of us even realized it!  What a clever boy he is!

In turn, here I am creating my own blog.  Maybe it will help someone else at the beginning of their journey.  Maybe no one else will ever read it, and it will just be my outlet, my documentation of E's progress... because it's really easy to forget just how far he's already come!

So here is our journey through Eli's World ...

(Note: I have linked some of you who I thought may be interested in following this blog for either information, interest, love of Eli, or what have you.  If you do not wish to receive emailed blogposts, please do not hesitate to let me know and I will remove your email.  And I won't be offended at all, I promise!)

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