February 22, 1999
~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
February 22, 1999
Dearest Friends,
I wanted to let you know what we are doing this month. Two months ago
we had
the most incredible speaker, Jill McCollum Gahley (from ASU) At that
time we didn't
have nearly enough time to ask her our many questions. So on Tuesday
March 9, 1999
we have invited her out again. Please come to learn behavior management
for our
children with special needs not to mention our severely normal kids!
:-)
What? Jill McCollum Gahley-Behavior Management
Where? Mesa Student Services Building
1025 N. Country Club
(on Country Club one block south of Brown Road)
When? Tuesday March 9, 1999
Time? 7:00 - till 9:00 p.m.
Respite? yes, you sillies! (and treats too!)
............................
Another exciting event coming up is the
Second Annual Family Exposition
to be held on Saturday May 8, 1999
from 11:00 until 2:00 p.m.
at the Crowne Plaza Hotel, I-17 and Peoria
for more information call Marcella at 243- 1787
Sharing will be having a table there to share with others what we do for
parents. I
am looking for a few parents who would be willing to come and man our
booth with me.
It will be our opportunity to tell other families who have a kid as cute
as ours about our
support group and all we have to offer. (Mostly love- xoxoxoxox!)
This wonderful event is sponsored by the ARC and it is a great time to
show off
our adorable kids! It is also a time for friends, families and
professionals to come and see
all the things that are available for families who have a child with any
special need. My
dear friend Bill Burke (Flagstaff ARC president) is pulling this
together. If you come for
no other reason than to meet him, you will meet a truly good man who
loves all people.
But he is slightly prejudice toward people who have special needs! The
best way I can
describe Bill is to tell you he is a good man who has his heart in the
right place.
Okay, so are you ready for, once again, the continuing saga of my
journal to you
of my crazy life? I didn't know (until last month) that any one actually
reads this stuff!
But something tender happened after I wrote you the last time. As you
may
remember I was crying about how hard a meeting went where the teachers
unloaded to me
about behaviors David was having. Not big ones, but it was a case of the
straw that broke
the camel's back. It wasn't until I sent you my newsletter that I
realized how many people
do care. My precious friends...I was so taken back with your kind words
of love and
encouragement. When I was a little girl we had a saying for when life
felt hard. We would
say,
"Nobody loves me, everybody hates me, I think I'll go out and eat worms!"
(Well, we never actually ate any worms, but it felt good to think we
might.) Last month
when I wrote to you, as you could tell, my heart was hurting. I was
ready to go out and
'eat worms'. There is a scripture I love from the Book of Mormon that
says we should
"Mourn with those that mourn and comfort those in need of comfort."
Well my dear friends...I just want you to know that is exactly what
you did for me. I
was so taken back when so many of you contacted me. You understood my
heavy heart
and you let me know you loved me. I even received a phone call from a
young mom,
Sheila Rzepecki , who call from Minnesota to let me know she cared. I
received many
notes of encouragement and love.
I also received a beautiful card from Bill and Carole Burke (an ARC
president in
Flagstaff.) I wish each of you could know how much your hugs, smiles and
kind words
meant to me. I know I can't repay you and it feels so inadequate to say
'Thank You', but I
mean it from the bottom of my heart.
I guess that's the part I love best about how God works. He blesses me
through
good people like you even beyond what I deserve. Thank you.
After the dust settled, I tried to look at the whole thing. I have
always believed
David's teachers, in their ' heart of hearts' wanted to do what was best
for David. I
realized the reason they do get frustrated is precisely because they want
to do a good job
for him and don't always know where to turn to do so. I am sure many
times they feel like
I did when David was born. I felt inadequate to the calling and
responsibility of teaching
him. It occurred to me that what they needed was support to help them in
this work. We
need to have an Inclusion Specialist at each campus. Someone they could
turn to when
they didn't know what to do. (Come to think of it... I could use one of
those too!)
Curt and I went to our superintendent of our school and shared this with
him. He
was wonderful and I am keeping my fingers crossed so that we can help
this happen.
"Together We're Better"
-Title of a Minnesota School Inclusion Grant Project
"Ask any parent of a child with a disability to describe the most
painful and
negative experience he has had regarding his child, and the odds are very
high that he
will describe an encounter with a professional-- probably a doctor or a
teacher. Ask the
same parent to name a person who made a crucial difference for his family
and child,
and he will again identify a professional.
Professional's constitute a significant portion of the cast in the drama
of our life
with our child, appearing in almost every scene and playing a multitude
of roles. In their
ranks we find our heroes and villains, allies and opponents, rescuers and
persecutors,
bitter enemies and beloved friends. These player exemplify the talented,
creative, and
compassionate, as well as the ignorant, cruel, and incompetent.
Unfortunately, it is often
the bad buys who play the leading roles in our memory.
Let's write a script for the good guys. It could star the pediatrician
who hung in
there with us through house calls and emergency room visits, treating our
baby's
persistent, complicated health problems, or the excellent teacher who
helped a child who
once hated school become one who wanted to learn. It might feature the
baby sitter
whose loving enthusiasm for our child helped us overcome our own
ambivalence. There
will be key roles for the teacher who understood that the bad behavior
was just a
symptom; the case worker who took risks to get our child what they
needed; the advocate
who taught us to claim our rights; the principals who praised our
efforts; the minister
whose support never wavered. It will be a musical, full of drama,
laughter and tears,
sorrows and triumphs, and it will end with a joyful song of praise and
thanks."
from Changed by a Child by Barbara Gill
..................................................
Do you remember in that same newsletter I also was telling you about my
dear
friend Cori who had lost her 7 year old son Garrison. (His disability
was undiagnosed.) I
had given some copies of my newsletter to some friends at our elementary
school. One of
those people was my friend Michelle. She had been Garrison's aid for two
years. She was
for Garrison what I would love for all of our kids. The was no doubting
the love she felt
for that little boy.
I had written about Cori feeling sad because Garrison always looked at
people
from the heart and her wish was that one day others would look at him in
that same way.
I mentioned in the letter that very few did and they were mom's of kids
with special needs.
Michelle contacted me saying she needed to talk. As I listened to her,
my own
heart was so deeply moved. When I think of people like Michelle I think
of her like I do
our very elite group of moms. We love our kids 'just because'. She is
one of us. It never
dawned on me that something I said in that newsletter could hurt her
heart.
I teach sign language as a volunteer at the school Garrison attended so
I am there
often I have seen first hand the love and kindness given not only to
Garrison, but to many
others. I saw these kindnesses given by such people as Lori Gallas, Mary
Lee Daniel, Pam
Edge, Heidi Simpson, Nancy Jenkins, Barbara Boeckh, Becky Rayburn, Phil
Hylton,
Darian Busch, Fran Moody, Adrian Decker, Connie La Prise, Michelle
Nielson and many
others. ( Not to mention the kids!)
I love the poem at the end of this letter about hurt. I want Michelle
to know I am
sorry I hurt her. But I also want to thank her for having the passion and
courage to write
this letter to me. It is a testimony of her love. Please permit me to
share it with you.
January 10, 1999
"Dear Gina,
I read your newsletter and wanted to let you know that I'm sorry your
had a very
difficult conference with David's teachers. Sometimes people do not
understand the
opportunities that they are missing out on, especially with special need
children. I'm
thankful for the opportunities that I have to work with children who have
special needs
and also for the experience that help me to grow and love these children
unconditionally.
Gina, I know you are a very kind and tenderhearted person and wouldn't
want to
hurt anyone's feelings and like wise, I don't want to hurt your feelings.
It is important that
I express my thoughts and feelings after having read your newsletter.
The comments about Garrison and Cori hurt me deeply. You knew how I
felt
about Garrison, and yet you wrote that no one understood or loved him
unconditionally
except for the parents with special need children. Cori might be feeling
this, but she has
just lost a child. I would like to think that you might have told her
how much I wanted to
understand him and how much I loved him. Several people would ask how I
could work
with him all day and how I did it. They don't have the same beliefs we
have, and how to
you tell people that I have the best job of all - I get to be taught and
loved my an angel
here on earth- how could I pass that opportunity up!
I think a lot of people were surprised that I would take the same job
this year. I
know that sometimes the school and the parents have different view points
on what is best
for a child, but I know that both only want the best for each child.
When I first started to consider working for the school district, I
wanted to work
at Neely Elementary where my children go and where I know the teachers.
As you know,
I took the opening at Burk -things didn't work out at Neely. This
summer, Heidi Simpson
was looking for help and Neely had a couple of openings. Darn it all,
Garrison was
tugging on my heartstrings. I wanted so desperately to continue the
opportunity to
understand and learn more about Garrison so that I could hopefully help
break down the
wall that kept him from communicating and learning.
I will never forget the day Mr. Blume called me into his office. I knew
Garrison
was going to be spending more time at school and I had already decided,
as physically and
mentally difficult as it would be, that I would make the change from
preschool. I wasn't
told any of this that day but instead, I was told that he passed away.
I have never felt a loss like this before. I did a lot of praying and
wondered why I
had to go through this. I don't know all the answers. I would like to
think that I could
show the children and teachers that he was a very special boy who could
be loved and
who could teach us all a lot. I also feel like I needed to be there for
some heart broken
children who loved Garrison. I had the opportunity to go to Mrs. La
Prises's class and
read every Wednesday. One day I asked them to think about this question,
"Were you
Garrison's helper or was Garrison your helper," and come back next week
and give me an
answer. The next week, every child answered that Garrison was their
helper. One girl
commented on how Garrison taught her to communicate with her heart.
I want you to know, and I hope some day that Cori will know, that her
dream did
come true. Garrison had a class, an instruction aid and many teachers
that loved him
unconditionally and will never forget him.
Michelle Nielson
To One Who Has Been Done Dirt
by Carol Lynn Pearson
Cry or curse or call it unfair,
But be grateful till the grave
That in this hurt
Your're the one who received,
And not the one who gave.
.................................
.
Lord, thank Thee for this sink full of dishes.
We have plenty of food to eat.
Thank Thee for the pile of dirty, stinky laundry,
We have plenty of nice clothes to wear.
And I would like to thank Thee, Lord,
for those unmade beds in there.
They were so warm and so comfortable last night.
I know that many have no bed.
My thanks to Thee, Lord for this bathroom,
complete with all the spattered mirrors, soggy,
grimy towels and dirty lavatory. They are so convenient.
Thank Thee for this finger smudged refrigerator
that needs defrosting so badly,
it has served us faithfully for many years.
It is full of cold drinks and enough
leftovers for two or three meals.
Thank Thee Lord, for this oven that
absolutely must be cleaned today.
The whole family is grateful for that all grass that needs mowing
and the lawn that needs raking. We all enjoy the yard.
Thank Thee, Lord even for that slamming screen door.
My kids are healthy and able to run and play.
Lord, the presence of all these chores awaiting me says
Thou hast richly blessed my family. I shall do them all cheerfully
and shall do them gratefully.
--Author Unknown
(e-mailed to me by Patti Pompa)
"We can do no great things, only small things with great love."
Mother Teresa
I'VE LEARNED...
I've learned that if someone says something unkind about me,
I must live so that no one will believe it.
I've learned that even when I have pains,
I don't have to be one.
I've learned that silent company is often
more healing than words of advice.
I've learned that if you pursue
happiness, it will elude you.
But if you focus on your family, the needs of others,
your work, meeting new people, and doing the very best you can,
happiness will find you.
I've learned that life sometimes give you a second chance.
I've learned that you shouldn't go through life with a catchers mitt
on both hands. You need to be able to throw something back.
I've learned that where ever I go, the world's worst drivers
have followed me there.
I've learned that when ever I decide something with kindness,
I usually make the right decision.
I've learned that there are people who love you
dearly, but just don't know how to show it.
I've learned that every day you should reach out and touch someone.
I've learned that people love that human touch-
holding hands, a warm hug, or just a friendly pat on the back.
I've learned that I still have a lot to learn.
....Anonymous
(e-mailed to me by my daughter CJ)
Sharing Down Syndrome Arizona ! Inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
602-926-6500
(e-mail 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