It Takes a Bit More Than a Village…

Rudy’s Birthday week includes dueling highlights.  You already know about the actual birthday happenings and you’ve probably also caught wind of the Heart Walk celebration coming up this weekend.  But wait, there’s more—tomorrow (Tuesday), Rudy will go to SCHOOL!

Life with HLHS has taught us to embrace the moment.  There are so many unknowns on this journey that we’ve learned to live life with less of a future orientation than normal. That means that milestones like this can sneak up on us.

I didn’t think we needed to be reminded of how big a deal Rudy starting school is, but we got a vivid enough reminder of this last week as his IEP meeting. (In case your wondering, “IEP” stands for “Individualized Education Plan” and it’s what therapists, educators and medical professionals set up for special needs clients—each one of whom is unique.)  Until now, the IFSP (Individualized Family Service Plan) sessions we’ve had have taken place around our dining table and all of the faces were the familiar and dedicated team from Tri-Counties Regional Center and NurseCore.

While Trish was more aware of what was coming, I had missed the detail that this IEP meeting was going to be at the Goleta School District headquarters, but shortly after arriving it was clear that a group this size wouldn’t have fit around our table.  So it may take a village to raise a child, but it takes a coordinated multi-jurisdictional agency effort to educate Rudy!  I think I counted 18 people—all there to discuss Rudy and what services he needed.

Let’s see if I can remember all of the agencies:

• Tri-Counties Regional Center (gave their final report as Rudy graduated their program by turning three)
• California Children’s Services (Rudy’s current PT/OT provider)
• Goleta Union School District (our home district came and assessed Rudy)
• Santa Barbara School District (where GUSD referred Rudy as he is non-ambulatory)
• SB County Education Office (who oversees inter-district stuff and provides Special Ed support)

Over the two hours we were together:  therapists and teachers shared their assessments and articulated goals; nurses clarified medical issues so insure safety and support in the classroom and on the bus;  and specific equipment and schedule needs were identified so that solutions can be devised.  Not every question was answered (and we probably didn’t know all the right ones to ask), but so much of the game here is to try things and see what can be worked out.

The reassuring thing is that so many very competent and dedicated people have their attention focused on Rudy.  I’m not sure I’ll ever get used to that awkwardgratefulhumble feeling that comes when I see so many people going to such lengths for my child.  To the nurses that never slumber, the skilled doctors who keep searching for ways to help him, and the friends that pray and continue to help in countless ways I now add this new team of dedicated people who are investing so deeply in Rudy’s development.

Stay tuned for the “first day of school” post coming tomorrow…

For our records, here are the results of Rudy’s final assessment at 36 months from Regional Center:

Fine Motor and Perceptual Skills –  Approximate Age Equivalent (AAE): 12 months

Cognitive – AAE: 16 months

Receptive Language – AAE:  12 months

Expressive Language – AAE:  12 months

Social/Emotional – AAE:  20 months

Self-Care/Feeding:

Feeding – AAE: 6 months

Toileting – AAE:  15 months

Dressing/Hygiene – AAE:  15 months

Gross Motor – AAE:  6 months