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…

Rudy graduates from Early Start with honors (!) and says goodbye to OTR/L Kris and Child Development Specialist Gwen.

 

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

 

 

 

13 thoughts on “It Takes a Bit More Than a Village…

  1. The Bus?!!! THE BUS???!!! You mean Rudy is going to get on a school bus and say “see ya, Mom, gonna ride with my peeps. Which seat will I take?”

    Can’t wait til tomorrow!!! I’ll be praying for a great first day of school.

  2. Rudy in school – wonderful news! Rudy on a school bus – fantastic! It’s so exciting to know he will be in school just like his big siblings, hahaa. It is the beginning of a new adventure and a new chapter in his little life thus far – how thrilling…..

  3. Just caught up on posts…HAPPY BIRTHDAY to our sweet Rudy. We haven’t even met you in person, but you have touched our hearts so dearly. It is such a joy watching you grow up, little guy, and we are honored to be friends with your family.
    Also, we cannot wait to see preschool pictures!
    Lots of love,
    the Nelsons

  4. LOVE how his social development is way beyond any other areas… thanks to the great influential skills of his siblings, no doubt!! Well done, Rudy…your hard work and amazing attitude are apparent to us all!

  5. You may be humbled by the group of people dedicated to Rudy’s care, but be honored by the even larger group receiving the daily blessings of knowing him and your family. It may take a village to raise a child, but what an amazing child he is.

  6. Hi Sweet Grandson, Rudy. The first days of school are always somewhat chaotic. I trust your social skills will make it an easy transition for you. Then there is your, Mom. What an adjustment for her to put you on that bus and spend all those hours waiting for you to come home. God be with both of you!

  7. What a star! School? Bus!? What?! That is awesome! Go, Rudy, go! We will be thinking of you at the heart walk this weekend! You rock!

  8. Wow! I have been gone a long time! Rudy is three and going to preschool! This is what I do everyday, and I’m so proud of my profession! Rudy will love school, I’m sure, and I KNOW his teachers will love him! But what will Mom do? LOL It’s so much harder on parents than it is on the kids…believe me…any tears usually stop within a minute or two…and I’m talking about kid-tears, not Mommy-tears!! Good Luck!!

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