Tuesday, October 28, 2008

Home Bound

We've started another new chapter to our family journey.  Now that Abby is officially considered a "home bound" student, our schedule is about to change.

As we wait for our turn to see the Deafblind team at Perkins School for the Blind, we are trying to maintain a daily routine of experiences for Abby, hoping that we will be able to further our communication with her.  The school notified us that they have received our completed, and very thick, packet of medical records, IEP's, progress reports and other necessary forms to begin the process of receiving a comprehensive Deafblind evaluation.

For those who aren't familiar with Perkins, you might recognize it from the story of Helen Keller.  The girl who defied all odds and overcame her dark, silent world with the help of a special teacher from this school for the blind.  Helen learned to use sign language and eventually went on to study at a University where she learned several more languages, verbally spoke in front of large audiences, wrote her own story and inspired people everywhere with her tenacity!   All this before the age of hearing aids, cochlear implants, and other useful technology that we have now.

We are really looking forward to our trip to Perkins.  Their Deafblind program is the best in the world (to our knowledge) and just the idea of taking Abby to see them sparks hope in us.

  They will perform a complete evaluation of Abby including cognitive, behavioral, auditory, visual and many others.  These people will help us develop an IEP that we can use to set realistic educational goals for our girl.  We anticipate after leaving their campus that our family will be equipped with knowledge, ideas, encouragement and hope that we can help Abby come out of her dark world.

So, I thought you might like to see what a typical day looks like here.  

Get up, dressed, meds, orthotics.  Gait trainer- 30 min.  Bean bag to rest- 10 min.  Connect feeding bag.  Music with movement.  

(Using both hands to manipulate ball- Huge for Abby!)

Sitting in the Rifton chair for hands on activities- vibration switch toys, play doh, textured objects.  Reading while using a braille book- guiding her fingers across the bumpy pages.  Swing time- vestibular stimulation.  Tummy time- development of trunk strength.  High chair time- oral motor skills, swallowing practice. Out side time- going for walks outside in the brisk air.  Feeling leaves, grass, sticks.
Meds at lunch time.  Down for short nap.  Afternoon- more of the same.

(Abby in her Rifton chair.  We love it!)

These are the days we are at home.  Mondays are feeding therapy days.  Tuesdays she will receive Speech therapy at the house.  We are waiting to schedule PT and OT for weekly visits as well.

This Thursday we are going to UCP for an initial PT evaluation!  To supplement the services her school provides, we will be taking her to UCP for additional services... not sure how often yet.

Josiah is enjoying taking part in these activities too.  He pushes Abby's gait trainer, and brings her toys to feel.  Today he got out our pots and spoons and "cooked" us lunch on his stove (a paper stove, drawn with crayon)

It will be helpful to have professional input on what our time with Abby should look like each day.  I certainly don't pretend to know.  All that we've learned have been from reading about Deafblindness and the wonderful developmentalist we saw over a year ago, Christine Roman.  Her knowledge and suggestions have inspired much of our activities.

We appreciate any prayers during this time of transition.  I absolutely love having Abby home with us, but it does mean no-more-frivolous-outings.  Most of our trips out have a very specific purpose usually surrounding a doctor's appointment... of which she has plenty!

(Cow.  Josiah's best buddy)

"Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content"

US blind & deaf educator (1880-1968)