Victor's Journey: Sister's curriculum for Victor

Wednesday, January 29, 2014

Sister's curriculum for Victor

One afternoon in January, we were wondering what Sofia was doing on the computer. Maybe Spore or Civilization? Instead, Sofia (10 years old) proudly brought us a wonderful list of activities she had written to do with her little brother Victor (age 4 at the time, now still enjoying these activities.) Here is her list--Enjoy!

Puzzles
•10 minutes
•Try up to three different puzzles
•Guide his hands, then ask him to do it alone
•No Distractions!

Painting
•As long as Victor is interested
•Finger painting, brush painting, let him choose
•Be sure to have a cleaning device ready
•Let him get creative

Music
•5 to 10 minutes
•No distractions
•Show him how to play the instruments, then let him play
•You play an instrument too

Drawing
•As long as Victor is interested
•Let him choose his color pencil or crayon
•Encourage him, praise him
•Be sure to name it, and show his parents

Dress-up
•As long as he is interested
•If he gets mad, either let him go or undress him
•Never put any hard hats on him
•You may dress him up as a female, unless otherwise instructed
•Do not overly dress Victor
•Let him choose what he wants to put on

Pretending
•5 to 10 minutes
•Try to create skills in him like strength and grip for the future
•This activity includes massaging, please see Victor’s parents for instructions on this
•If your vision of this activity includes action figures, rocks, or any other items small enough to fit in his mouth, watch him closely
•Do not use any breakable items

Dance
•10 minutes
•Victor likes to mess with the radio, and if he finds a song that is appropriate, dance with him to the song
•See one of Victor’s sisters or parents to get ideas or songs to dance to with Victor
•Do not overly spin Victor

Study Time
•As long as Victor is interested
•Tell Victor about the world, share secrets with him, teach him how things work fill his mind with information
•Victor will sustain as long as he is playing or messing with something else, just not noisy toys

Computer Time
•10 to 15 minutes
•Victor has little music videos on his computer that he always enjoys, ask one of Victor’s parents or sisters for directions to get into this program

Gym
•10 to 15 minutes
•Victor will do somersaults
•Show him first, then put his head down and he will roll
•You may do anything fun in gym, just not something dangerous, ask Victor’s parents for ideas and\or suggestions
•Under Sofia’s bed, (in the yellow room) there is a big play mat, use this to produce a soft landing

Reading
•10 to 15 minutes
•Guide him to the books then find somewhere to sit and he will bring a book to you, sit him next to you, then ask him if he wants to read this book, he will answer “uh” then read and follow the same procedure
•Read at least 5 books

Note to the reader: “uh” means yes

Our Vision

We wish to develop a large community of friends around Victor who:

Allow themselves to be filled with the joy that Victor stirs within people who get to know him for whom he really is: a happy child rejoicing in the smallest things of life, reminding everyone to live for the moment,
Accept the differences brought by people and children with special needs as an integral part of society,
Understand the challenges people and children like Victor face and are willing to be advocates for their needs, and
Want to help make a difference in other people's lives by sponsoring research into rare diseases like Pitt Hopkins syndrome.

Victor's Story

This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in August of 2005. He has a deletion of Chromosome 18q 21.2 – 21.32 / Pitt-Hopkins Syndrome. We also have two wonderful older girls who are typically developing. Our family lives in North Carolina, USA.

Victor is a very happy child, who loves to meet and interact with everyone–a true extrovert. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has asthma and has been hospitalized many times due to viral respiratory infections. He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor sometimes holds his breath for a few seconds when he doesn’t seem to be feeling well or is very tired. Victor has developmental disabilities. He rolled over at 9-10 months, sat at 11 months, crawled/bunny hopped at 14 months, stood alone at almost 2 years old, took his first steps at 2, and began walking independently at about 2 1/2 years old. He wears custom orthotic inserts in his shoes to provide proper alignment and added support when walking. He has a little bit of an ataxic gait pattern, and needs help with curbs and stairs.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language —he can understand much of what you say to him, but currently is not speaking yet. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he is beginning to use some signs, putting 2-3 signs together at a time. He also uses a communication app developed by his Daddy for the iPhone/iPad, called Verbal Victor, with much success! We help him learn new things through prompting, repetition, and redirection. Victor loves listening to music, looking at books, playing with tops, watching favorite videos, using the iPad, playing outside, swinging, kicking a soccer ball, going down a slide, pedaling his tricycle and many other things–he enjoys everything that life has to offer! He is a joy and an inspiration to us all!