Mary Alice Castellano, the sunshine of our lives, was expected on Christmas
Day 1995
but joined us instead on Thanksgiving Day November 23, 1995.
We took
that as a special message.
She was born with Down Syndrome (Trisomy21).
She has been on the
TNI (Targeted Nutritional Intervention) vitamin therapy
Nutrivene-D (a custom version) plus DHA or cod liver oil and a few other things
since she was 8 months old and is doing wonderfully!
She is one cute little girl, with
personality PLUS and we are SO proud of her!
I am now happily homeschooling
her, and her speech especially has improved greatly. She is truly communicating now - in fact, she's a chatterbox!
She is doing 1st grade work generally, with reading skills at ~3rd grade level.
We also are doing a NeuroDevelopmental program from Linda Kane at Hope And A Future.
I must say that she is the best thing that ever happened to me. Not that there aren't difficult moments, but I have learned SO much from her and from having her, learned about myself, learned about what's really important in life, found abilities and strengths I never would have known about, learned how to enjoy the moment, how to appreciate the little things in life (which are really the big things IMO).
I've learned to research and to trust my own feelings and gut instincts, and stand up for what I believe in.
Mary Alice can find some fun in just about anything and I am eternally grateful that she is in my life.
Mary Alice at 3 3/4 years, with some of her beloved
flashcards:
She adores books. They have always been her favorite toys.
From
about 14 months on she would often spend 20 minutes or more "reading" thru her
books page by page.
By her second birthday we were working on word flashcards (Glenn Doman style)
and using the
LOVE & LEARNING series and her favorite word was "abada"
(alphabet!). She was reading 25 words.
By Feb 1998 she was reading
about 50 words and by June probably twice that. At three she was up over 200
words.
She learns new words quickly, and by age 6 we were working on short phrases and
sentences, and reading easy books.
She knew the alphabet, upper and lower
case, numerals 0-12 and understood quantities 0-6 and was starting to
count by age 4.
She began identifying basic colors around 18 mos. and could identify or
match the written names to about a dozen colors by age 4.
Now she loves board games, which are great for learning lots of skills, and puzzles.
A recent portrait taken by my sister Sarah
who does beautiful photography.
Pictor Luminis Photography
She has a great sense of humor and makes up lots of little games.
She loves to laugh, especially
at her own jokes ;-D Lately she is into Knock Knock jokes.
No doubt they'll discover the Sense of Humor gene on chromosome 21!
Daddy took 9 years completing his RV-6!
First
flight was February 19, 2001. He's very proud :-)
Mom is a professional free-lance violist (that means
I play the Viola)
who was lucky enough to play in Italy for five years
and to study with Kim Kashkashian :-)
To help your child with DS, or ANY child, to do their best I
really recommend reading the books by Glenn Doman (especially "What To
Do About Your Brain-Injured Child" and either "How To Teach Your Baby To Read"
or "How To Multiply Your Baby's Intelligence" which covers reading, math and
more) for starters. If these aren't available through any regular or online
bookstore they can be gotten from his website linked below. With that background then you can listen to the audio tape series by
NACD or tapes from the independent NDs for more ideas and insight into neurodevelopmental issues.
Meanwhile, click here
to go to Dr. James MacDonald's
very insightful and supportive website on nurturing communication and
socialization with the child.
I feel that a lot of the great improvement in Mary Alice's speech since I started homeschooling her is due to use of his techniques.
These resources have given me invaluable
concepts and information on child development, how to approach working with her,
what to work on, and perhaps most importantly, hope for what she could
accomplish and inspiration to help her achieve it. I must also say that I adjust
and adapt the activities to suit our temperaments and lifestyle, and most of all
try to have fun with it.
The more stimulation (of ALL the senses),
input, & opportunities to experience and learn a child has, the more capable
they will be. The more love and positive support a child receives, the more
capable and happy they will be. This is DOUBLY true for our kids with DS. See Einstein Syndrome essay!
One
of Mary Alice's favorite activities I did from the time she was a baby was her twice daily full-body deep massage.
With things like this and the TNI protocol working for her, her muscle tone is
close to normal.
The science behind the TNI is called Nutrigenomics. Observational data indicates that this TNI protocol not only
normalizes the often poor immune systems of those with DS, it gives them at
least a 10-15% boost in both physical and mental abilities.
I find
that pretty exciting, and if you combine that with lots of love and
stimulation, you can see that our kids are doing wonderfully well! :-))
Did you know that our kids have a special talent for
reading??!! Reading is a "way in" to good language skills and can help them
in many ways.
For more info on this, click here to read research about READING BEFORE
TALKING on the River Bend website!
If you have or know of a young
baby PLEASE go read these articles which contains some very important info about
oral development.
Click here to see Oral Motor Myths (from Sara Rosenfeld-Johnson) and
Oral Motor
Suggestions.
Thyroid problems are almost a given in DS. Please test
and treat agressively! If the child seems to be slowing down, not growing,
putting on weight, learning slower, losing skills, developing drier skin,
becoming more introverted, etc. MAKE them test! There is research showing that a
TSH of 5.7 or greater in DS causes MEASUREABLE losses in mental and physical
development. Jan.2003 the AACE stated that the "normal" range for TSH is 0.3 to 3.0 and I've heard that it may only be 0.3 to 2.5 now.
I believe it to be no coincidence that the textbook description of
DS encompasses the description of Cretinism!
Ask me for more info (been there
done that!) and click here to go see thyroid.about.com for starters.
Did you know that there are waiting lists of parents wanting to adopt babies with Down Syndrome?
PLEASE CLICK ON THE LINKS BELOW TO LEARN MUCH
MORE!
__________________________________________________
There are several great
email list.servs offering information and support on DS and the various
interventions I have discussed.
Please Email me if you like and I can describe them and
direct you to them.
Please feel
free to contact us if you have any questions.
Please let me know if any links don't work.
***See
page 2***
for more pics and thoughts :-)
