The Diagnosis

Again, not surprising, I'm writing about "the Baby".  We now know why he "runs us ragged with Joy"...wait for it...wait for it...he's Autistic.  It has been a few years since teachers started noticing challenges specific to Ben that other children didn't create in the classroom.  I am so pleased I put him in Youngstown City Schools Preschool Program.  I shudder to think how his growth and development may have been stunted had we kept him in private care without the resources the city program had at their disposal.  Some examples include: Top notch literacy curriculum, highly trained and skilled educators (most private institutions require no college or only an associates, where YCSD teachers are fully licensed in early childhood education with at least a Bachelor's Degree), access to advanced hearing tests with a licensed Audiologist, screenings with Speech Pathologists, and a comprehensive evaluation process once the teacher notices "red flags" (PAINT - which I don't fully understand).  Having said that, Ben was only on the fringes at that point, and being so young, differences in behavior aren't as prominent. (Little children do weird things, LOL!)  

Transitioning to Canfield schools brought a whole new roller coaster of events.  Someday, when it isn't so painful, I will write in greater detail about it all.  For those just coming to terms with diagnoses of their children, the horror stories are all too familiar.  For perspective, I'll share some of the highlights:

• Emails from the teacher beginning week 3 about our child's "challenging" behavior
• Doctor evaluations and notes regarding the soiling accidents which would inevitably occur
• Referrals to a series of Medical and Psychological Specialists
• Several meetings to explain to the school what we'd already submitted in writing from the Medical professionals
• Meeting with a social worker from Mahoning County Children Services in our home, who wished to examine Ben's bedroom, because someone at the school was convinced that he must be neglected or abused, rather than the school needs to differentiate and serve those with special needs
• Hearing horror stories from other parents with similar experiences and learning where this could all lead if not handled delicately
• Sobbing in my car after the call from our Home Study Social Worker, to request we voluntarily withdraw our application to be foster parents
• Realizing Advocacy for my child is going to be an uphill battle at the easiest, and the makings of a "made for TV movie" at worst
• Get Elected to School Board (to put a voice of Parents with similar experiences on the Board)

What's your story?

We are starting an entirely new journey now.  Everyone in the family is going to be trained in ABA Therapy, and we all have to learn new tools, such as the "First Then Visual Schedule" App.

The training is only in its infancy.  We haven't even gotten the full diagnostic report from the Psychologist, but the minute we do, it's getting forwarded to the new Psychologist whose practice specializes in the ABA Therapy.  None of this would be possible without the Autism Diagnosis.  We are lucky.  Parents whose children present behavior challenges and are not diagnosed with Autism have no access to resources.  The Legislators of the great State of Ohio have a fetish for "Autism" so they only fund school and therapy resources if the child has that diagnosis.  A month ago, our four diagnoses of ADHD + Oppositional Defiant Disorder + Social Communication Disorder + Encopresis = no insurance coverage for his behavioral needs therapy.  I would love to say Ohio can do better, but seeing what they did with education in the past 10 years (dropping our National Rankings from 5 to somewhere around 31), I won't hold my breath.

Despite all the bad, there is good news!  The FTVS app is a GAME CHANGER!!  Like the medicine which was first prescribed by the pediatrician over a year ago, the APP prompted immediate changes in behavior and responsiveness.  The diagnosis has certainly opened doors to tools and strategies that will help us and help Ben navigate the world with less uncertainty and more independence!  God is Good!

My message to Parents still struggling...keep fighting until you get the right diagnosis.  Keep advocating, even when everyone believes you are insane.  You know your children and their needs.  Make it happen for them one way or another.  It is humbling to say to people at the outset "our son is Autistic" but thankfully, to changes in culture in our country, we get caring smiles of affirmation now, and not stares and glares of horror (like we did before we had a single name for it).