Here is a list of resources that have helped our family!
HIGHLY recommended books:
The first two are a little pricey, but we refer to them all the time! Consider asking
your library to purchase them if they are out of your budget.
Handling the Young Child with Cerebral Palsy at Home
by Nancy R. Finnie -- click here.
Motor Skills Acquisition in the First Year
by Lois Bly -- click here.
The Out-of-Sync Child
by Carol Kranowitz -- click here.
Our Favorite Equipment Recommendations:
Stroller/wheelchair: The Jazz EaSys by Thomashilfen (www.exomotion.com)
Entertainment/toys:
Videos:
Scotty and Lulu
Disney....sorry Ralph, but the stuff you did on your own was better!
Laurie Berkner
Dragon Tales
Dora
Baby Mozart
Music:
Of course the GIRL POWER CD! These are all of Sarah's favorite songs!
Scotty and Lulu -
Steve Songs (Steve does the BEST version "Bear Hunt" ever!!!)
Gwendolyn & the Goodtime Gang
Latin Playground
Jack Johnson (Curious George soundtrack)
Tom Salvatori - "Late Night Guitar" (she falls asleep to this every night!)
Toys:
Rolling cow
Light up piano
Ball popper
Foosball -
Books:
Silly Sally
anything Dr. Suess - favorite is ABC and I Can Read with My Eyes Shut
Farfallina
Yukadoos
The Teeny Weeny Tadpole
DIET -
Saving the best for last here! Things have been soooo much better for Sarah
since we started her on a gluten free/dairy free diet two years ago. Better sleep,
less screaming, more alert, and no more constipation!
It is really easy. Just think of things she can eat, not can't....she can eat all meat,
veggies, fruit, fish, rice, potatoes!
You see, the proteins in gluten (mostly found in wheat) and dairy are really hard
to digest for anyone...but add on being special needs ---- most of whom have
gastrointestinal disorders --- and pow!---you are slammed. Casein, the dairy
protein, builds up in the body and is as potent as cocaine to the central nervous
system. Gluten messes up the gut lining and allows yeast overgrowth that puts
huge holes in the stomach lining and messes up the food processing and
causes pain.
CAUTION: If you decide to try this diet, taper off slowly. We went cold turkey with
Sarah and it was like a drug withdrawal....days of no sleep and lots of screaming.
Also, it takes SIX MONTHS to get all of it out of your system, so be patient!
HIGHLY recommended books:
The first two are a little pricey, but we refer to them all the time! Consider asking
your library to purchase them if they are out of your budget.
Handling the Young Child with Cerebral Palsy at Home
by Nancy R. Finnie -- click here.
- This book really gave us a good look at how to incorporate "therapy" into
daily routines and challenge our daughter to keep her strong and healthy.
Motor Skills Acquisition in the First Year
by Lois Bly -- click here.
- This book is AMAZING! Takes the entire first year - basically birth through
walking- and breaks it down into every tiny thing that needs to happen
before the next thing can happen. This really helped us see the path and
get Sarah working on the in between stages....not just randomly focusing
on major milestones like sitting or walking.
The Out-of-Sync Child
by Carol Kranowitz -- click here.
- Most special needs kids have some sensory issues. We figured out about
Sarah one day when she was about 10 months old.....my son and sister
were playing ping pong and I sat her up on the table....when the ball was
bouncing and making a lot of racket, she was able to balance in sitting. As
soon as the ball stopped, she fell over! Now we have music playing all the
time, we have two swings in the house, and other neat things. It really
works!
Our Favorite Equipment Recommendations:
Stroller/wheelchair: The Jazz EaSys by Thomashilfen (www.exomotion.com)
- We researched this like crazy! This one is crash tested, so is safe for
school bus transport. It folds. The seat is removable and can face in
either direction...and is fully reclining! There is a rain/sun hood. A basket
underneath...the works!
- Of all the little devices out there, this one gets the most use. You can
record different messages on it in order....so each time Sarah hits it, it
moves to the next message to say. She can "read" books to her friends,
be "Simon" in Simon Says, rule "Red Light, Green Light!", etc.
- RJ Cooper rocks! We use two of his software programs and will be getting
more stuff as Sarah gets older.
- I wish I had gotten this years ago. It really helps when Sarah wakes up in
the middle of the night...helps her fall back asleep.
- Funny, I looked and looked for arm braces small enough for Sarah and
all along they were at armbraces.com! Easy web site to remember!
Entertainment/toys:
- Sarah is pretty picky about this stuff...there are only a few DVDs and CDs
that she will watch happily. Anything else, she gets pretty darn fussy!
Videos:
Scotty and Lulu
- Click here for a "Scotty and Lulu" special where all proceeds are donated
to Rett Syndrome!
Disney....sorry Ralph, but the stuff you did on your own was better!
Laurie Berkner
Dragon Tales
Dora
Baby Mozart
Music:
Of course the GIRL POWER CD! These are all of Sarah's favorite songs!
Scotty and Lulu -
- Hands down, Sarah's favorite group and they have 5 albums! Click here
for a "Scotty and Lulu" special where all proceeds are donated to Rett
Syndrome!
Steve Songs (Steve does the BEST version "Bear Hunt" ever!!!)
Gwendolyn & the Goodtime Gang
Latin Playground
Jack Johnson (Curious George soundtrack)
Tom Salvatori - "Late Night Guitar" (she falls asleep to this every night!)
Toys:
Rolling cow
Light up piano
Ball popper
Foosball -
- Foosball is a great therapy item! We have one of those game tables with
the different tops you put on..so we put the foosball one on the floor.
Sarah sits and tries to turn the handles, she tracks the ball with her eyes
and we count to keep score! Plus big arms raised up to cheer!
Books:
Silly Sally
anything Dr. Suess - favorite is ABC and I Can Read with My Eyes Shut
Farfallina
Yukadoos
The Teeny Weeny Tadpole
DIET -
Saving the best for last here! Things have been soooo much better for Sarah
since we started her on a gluten free/dairy free diet two years ago. Better sleep,
less screaming, more alert, and no more constipation!
It is really easy. Just think of things she can eat, not can't....she can eat all meat,
veggies, fruit, fish, rice, potatoes!
You see, the proteins in gluten (mostly found in wheat) and dairy are really hard
to digest for anyone...but add on being special needs ---- most of whom have
gastrointestinal disorders --- and pow!---you are slammed. Casein, the dairy
protein, builds up in the body and is as potent as cocaine to the central nervous
system. Gluten messes up the gut lining and allows yeast overgrowth that puts
huge holes in the stomach lining and messes up the food processing and
causes pain.
CAUTION: If you decide to try this diet, taper off slowly. We went cold turkey with
Sarah and it was like a drug withdrawal....days of no sleep and lots of screaming.
Also, it takes SIX MONTHS to get all of it out of your system, so be patient!
| Girl Power 2 Cure, Inc. Rumson, NJ 07760 732. 917.4804 © Copyright 2008 Privacy Policy |
Watch a video of
Sarah participating
in her Kindergarten
Christmas
sing-a-long!
CLICK HERE
Sarah participating
in her Kindergarten
Christmas
sing-a-long!
CLICK HERE
 |
Sarah is our Rett angel. She will be in 2nd grade this Fall with a one-on-one aide. She
loves being around other children, especially her big brother Pierce (10) and little sister
Gretchen (5).... she loves to giggle a lot when her little sister gets into trouble!
Rett Syndrome has robbed her of speech, as well as purposeful hand use and being able
to walk, but she is getting stronger every day. She is a bright, vivacious, brave little girl
who teaches us many things about what we normally take for granted.
Her favorite things: a warm, breezy day, Scotty and Lulu music, water therapy, her friends
at school, watching football with her papa.
loves being around other children, especially her big brother Pierce (10) and little sister
Gretchen (5).... she loves to giggle a lot when her little sister gets into trouble!
Rett Syndrome has robbed her of speech, as well as purposeful hand use and being able
to walk, but she is getting stronger every day. She is a bright, vivacious, brave little girl
who teaches us many things about what we normally take for granted.
Her favorite things: a warm, breezy day, Scotty and Lulu music, water therapy, her friends
at school, watching football with her papa.