~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
October 5, 1998
Dearest Friends,
There are so many good things I want to tell you about. Now you know
how I use
my letter to you kind of like a journal. Curt teases me and says I am
boring you but it's
good therapy for me! But even if you don't read all the 'stuff' please
read the end pages to
find out about some great activities that are coming up!
Have you ever wondered what your children will say when they grow up in
describing how their brother or sister who has a disability has affected
them. Recently a
new mother asked me that question so I wrote to my son who is serving a
mission in
Japan and this is his response.
****************
September 18, 1998
To those who will read,
I am writing this letter in response to the question posed to me of how
has my little
brother's life impacted mine. When David was born I was only about 7
years old or so.
Needless to say, I 'm sure I didn't understand all that it meant even if
my mom told me that
he would have Down syndrome. To me, it wasn't different than the birth
of any of my
other 5 brothers and sisters.
As we both grew so did our relationship. I knew David was a little
different than
most of my friends' little brothers. Usually, in a handicap awareness
day at school, they
would ask if anyone had a relative with a handicap. I was, for the most
part, the only one
to raise a hand. Although a little shy in my class at that age, I never
remember this being
an embarrassment to me. On the contrary, it was something that I felt,
even at that age,
added value to my life.
Once, upon hearing of a noteworthy choice to do right I once made with a
friend,
that friend's mom observed that she felt my siblings and I have many
qualities that she
feels are a result of having David for a brother. While I can't claim to
be possessing of
much nobility in terms of attributes, I know there are certain things I
have learned from
David that I could learn from no other. He obviously needed a little
more watching over
than most children. This was not always the easiest of tasks. Any
member of a family
blessed with a member who in some way may be handicapped, can attest to
the fact that
patience is something you learn, whether you like it or not.
But in addition to that, I feel that identifying with someone
"different" gives one a
new perspective on other people with differences, whether they be
physical, mental,
racial, cultural, or what not. One can not help but realize that all
mankind must be
accepted when seeing the pure love displayed by one such as David. That
is the quality
and virtue I would like to cite most of all: love.
I have never seen more love radiated than that which shines forth in the
eyes and
actions of these special people. I am grateful for the chance I was
given to grow and love
with David, and it is my continuing hope to ever become more like him in
this aspect.
Simple as it may be, these are my thoughts. There will be hard times,
often more
growth produced by trial than we would prefer. The difficulty, however
lies more in
ourselves than the task itself. Thank you for listening to my words, and
thank you David .
A grateful and loving brother,
Seth Johnson (age 20)
******************
October Sharing Meeting
At our last meeting many of you asked questions about writing you
child's IEP and
inclusion. For our next meeting I have asked a dear friend, Judie
Walker, to come and
role play a mock IEP meeting with me and answer questions you may have.
She is
dynamic and you will learn much!
What? Individualized Educational Plan for your child...how to
it works!
When? Thursday October 15, 1998
Why? To learn how to write a good one and even better-
how to be your child's best advocate!
Where? Mesa Student Services Building
1025 N. Country Club
(between University and Brown Road, east side)
Time? 7:00 - 9:00 p.m.
Respite? Yes of course, we love those little ones!
As I look back on these past almost 15 years of being 'David's mom', I
realize how
far he has come. With all due respect, the professionals are not always
right. When David
was 3 years old, he was given a complete evaluation by our school
district. When the
psychologist told me of the results, I was devastated. She said he would
be 'trainable.' I
didn't' know what that meant. She said he would probably be able to be
potty trained."
My heart sank. I loved David for who ever or what ever he was, but this
felt so hard. As
I looked at my active little boy I wondered how they could know that this
was all he
would ever be.
I am so glad I didn't believe them when they told me all he could not
do. I would
have given up. I accept he fact David has a mental disability but I was
determined to help
him, as much as I could, fit into our world. It is never too late to
start or too early to
begin. I treated him the same way I treated all my kids. He deserved
no less. Including
going to school with his non handciapped neighborhood peers. You would
think this
would sound reasonable, but it took a lot, just to get that.
As children are included with typical children, they learn to be kids,
to get along,
to share, to honestly feel comfortable with others. Peer tutoring is a
powerful teacher. I
had a dear friend who works as a school psychologist noticed something.
She said she has
noticed the kids with special needs who are just pulled for a class here
or there, like lunch,
Art, P.E., Music etc. are 'hyper vigilant' about their surroundings.
They are so concerned
about their environment, that they don't even know how to be part of the
class.
Once when this friend observed David she said she couldn't believe the
difference.
What I also see is that the kids treat our kids a peer. They do not do
this when the kids are
only in there a little bit.
David love the kids at Gilbert Jr. High and he is one of the most
popular kids
there. (and this is not even this proud mom bragging, students and
teachers have told me
that)
The same psychologist I was telling you about shared with me that David
is the
highest functioning child with Down syndrome that she had seen. Is he
smarter than other
kids with Down syndrome? No. But because he has grown up with typical
kids he has
learned to model those behaviors. The first time he wouldn't hold my
hand at the store I
was crushed. But then I realized no other young man his age was holding
their mom's
hand either! (Duh, Mom!)
Were the doctors and professionals right? In a way yes, because he was
slower to
do things. He took longer to potty train and he didn't walk till he was
2 1/2. But now at
almost age 15 (this November 11th) we now know David is 'educable'. He
can read and
write and does very well at math. As I stand back and see how far he has
come I
understand that all the times I had to be his advocate and stand up for
him was worth it.
In a way I hoped that I was standing up for each child who has a
disability.
A CHILD FIRST... 'Understanding he is a child first, and disabled second
is
the greatest need of the handicapped child if he is to succeed
educationally in the least restrictive environment."
Martha F. Robinson Education Unlimited.
What is David learned from inclusion? He is learning how to belong in
this
world. He and the other kids are learning how to accept others
regardless of
imperfections.
He has come a long way. He understands right from wrong. He likes to
tease his
brothers and sisters. He genuinely likes people. He makes friends
easily and they
sincerely like him. Probably the best thing that inclusion brought to
David was a best
friend named Blake Miracle. Blake is a very typical young man who has
been friends with
David since elementary school. Blake is well on his way to being a
normal teenager. He
is a member of the football team, and is well liked at school. But has
his relationship to
David changed? No, if anything they have grown closer. He comes over on
Friday nights
and they have fun doing the things teenage boys do.
They have sleep-overs, eat cheese pizza, play basketball, play Nintendo,
play on
the same roller hockey team, go to the mall, so to school dances and talk
about the cute
girls. Once night at dinner when Blake was here, he was teasing David
about a pretty girl
David has a crush on. When he did that, David socked him in the arm and
they laughed. I
had to laugh too. That is exactly how my others boys would have
responded.
We were out of town recently and Blake called and told the couple
tending that he
and David had been planning to go to the school dance. So my friend
Derek drove them
to the dance. He told me David's aide at school said David had a little
too much fun! (I'm
not even sure what that means and I'm not sure I want to find out!) But
I had to smile.
Of course David thought he could go. He went last year, but what he
didn't know is his
big brother Luke went along and I was hiding in the shadows just in case.
David and
Blake had a great time and all while this old mom didn't have clue!
Why inclusion? To quote David's fourth grade teacher..."This is the
only time in
David's life when he will have the chance to be a fourth grader." (or
6th, or 8th, etc.!)
~~~~~~~~~~~~~~~~
I know the youth of today are the decision makers of tomorrow. I never
again
want them to ever feel comfortable creating a 'Randolph State
Institution' no matter how
good the intentions were. When I lived in Utah I had the opportunity to
be a part of that
states 'de-institutionalizing' people who had lived in American Fork
Training School for
their whole lives. As I met these people I noticed something most of
them had in
common. They were all missing their front teeth. My husband is a
dentist, so I asked him
if there was dental reason for this. I wondered if having a disability
caused greater tooth
decay.
He sadly told me no. I learned that these people had their front teeth
pulled when
they were little. Why? Because they went through that stage that almost
every toddler
does of biting. Only instead of a mom giving a quick spank on the bottom
and telling the
child "no" they pulled their teeth instead. Did those who did this even
think of the
repercussions? That even simple speech would be more difficult now?
Probably not.
Did we as a society intend to treat people who had a disabilities as
second class
citizens. No, but we did it anyway. As we let our children experience
inclusion we are
giving the other children a priceless gift. A moral conscience
concerning people with
special needs.
David's peers have done more to teach him what is acceptable behavior
that I
could ever hope to I want David to feel a part of this world. I am
thankful for the many
people who have impacted David's life. I am thankful God has given you
your child...I
know he will also help you to know what is right for him or her.
One of the most important things I have learned is that your child's
placement is
IEP driven. So that makes all the difference in the world. Please come!
**********************
I wanted to let you know what the Phoenix Down Syndrome Society is
doing.
I am sorry I won't be able to attend this because it's held on Sunday,
but I knew you
would like to know!
Phoenix Down Syndrome Society
Annual Buddy Walk
Local children and adults with Down syndrome and their designated
buddies; and
many other supporters will participate in the 3rd annual Buddywalk.
Following the walk
will be a Barbecue with activities of a "rodeo" theme, and fun to be had
by all. For more
information, donations or to RSVP please call (602) 580-9338 (Lynnlee
Goebel)
When? Sunday October 25, 1998
Time? 9:30 a.m.
Where? The Waterin' Hole Centre
located at the Pointe Hilton Tapatio
11111 N. 7th Street, Phoenix, AZ
RSVP (602) 580-9338
It is necessary to RSVP so they can know how many to plan for! Thanks!!
&&&&&&&&&&&&&&&&
Parent Coping Study
(I am sure I was sent this because we are so well adjusted! :-) (computer
talk for a smile!)
...the following was sent to me by Dr. Raun Melmed who asked if we would
run it in our
newsletter..
The Southwest Autism Research Center is conducting a study in
collaboration with
Arizona State University.
We are looking at ways parents cope with children who have disabilities.
If you are a parent of a child with Down syndrome, age 2-10, you are a
candidate to
partake in this study. You will be asked to complete some surveys
regarding your
attitudes adn feelings. It should e a fun learning experience!
We understand that your time is valuable and would like to offer each
participant a full day
pass to Fiddlesticks Family Fun Park along with a $25.00 gift
certificate to Toys R Us.
Please call Raun Melmed, MD or Mary Mackrain at (602) 607-2717 if you
would like to
be a participant. We are dedicated to helping families and children
reach their highest
potential and we express gratitude for your interest in this important
research.
&&&&&&&&&&&&&&&&&&
November Carnival!!
Yeah!
A wonderful young man, Landen Tutt, is hosting on a free Carnival for
our kids on
Saturday November 7, 1998 from 2 till 4 p.m. It will be held at the
Gilbert Jr. High
school gymnasium. Watch for more information. He is doing this for his
Eagle Scout
Project. I know it will be a lot of fun! Landen is the son of Rick and
Floramae Tutt.
Landen's little sister Lauri has Down syndrome. :-)
-------------------------
Christmas Party
Just to make you (and me) a little crazy, we have had to move our
Christmas dinner and party to Saturday December 12, 1998
It will be more than it has been in past years. We are going to have
games and fun
in addition to our pot luck dinner. Also we would like you to bring a
wrapped gift for
Santa to give your child. (brought in discretely of course!) We just
love Santa. As you
know, he is the real one, not just a helper! This day is the only time
he could sneak away from the North Pole! The time is changed too.
Please note: Saturday December 12, 1998
time- 2:00 p.m. till 5:00 p.m.
(Santa will come at 3:00 p.m.)
Gilbert Jr. High School- cafeteria.
Come to see old friends and meet new ones!
Bring a main dish pot luck food item.
***********************
FYI
Kathy Mutschler does day care in her home, and has a play group for
children with special
needs. For more information please call 990-8909.
............................
Floramae and Rick Tutt told us about a wonderful video that
helps develop
language and
reading skills. It is created by "PINT" Parent
Involvement and New
Technologies"
For more information please write to:
Love and Learning
P.O. Box 4088
Dearborn, Michigan 48126
...................
"The highest reward for man's toil
is not what he gets for it,
but what he becomes by it."
Affiliated with the National Down Syndrome Congress and the National Down
Syndrome Society
Sharing Down Syndrome Arizona!inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
(602) 926-6500
gina.j@juno.com
"I know God will not give me more than I can bear.
I just wish he didn't trust me so much."
Mother Teresa