~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
February, 1999
Dearest Friends,
This has been a challenging month for me but I will tell you more about
that later.
I wanted to let you know that our meeting this month is one I think you
will enjoy. I have
invited Annette Petzel from a company called the Dignity Group to come
and talk to us
about financial planning concerning our children who have special needs.
I know we each
worry about how our children will be provided for after we are gone.
Come and see what
she has to say.
--------------------
What? Annette Petzel with the Dignity Group of Arizona
Why? To teach us what we can do to prepare for our child's future financially.
(Note day change)
When? Thursday February 11, 1999
Time? 7:00 till 9:00 p.m.
Where? Mesa Student Services Building
1025 N. Country Club
(south of Brown road, right on the corner a small street called 10th Place)
Respite? Of course!
----------------------
Last month was one of the greatest meetings I think we have had in a long
time. I
loved not only listening to Jill McCollum-Gahley (from ASU) as she spoke
to us about
behavior management, but I loved how she was so honest and realistic and
even could
make us laugh. I am thankful for people like her who make a difference
in our world for
the good. She was suppose to address us next month about how to foster
esteem and
motivation in children with special needs, but after an overwhelming
vote, we have asked
her to return and talk to us some more about behavior. So mark that on
your calendar for
Tuesday March 9, 1999!
...............................
I don't know how it is for you but sometimes just being a mom is hard.
We give
so much, but at times it's easier to count the times we fail, instead of
when we succeed.
Sometimes even in all that we do, I wonder if it is making a difference
at all.
One school day I was going crazy trying find David's back pack. I had
looked
everywhere. I finally decided to take him to school and then try to look
some more. I
know it sounds crazy, but these are the times that are the hardest for
me. I feel so
frustrated. I wonder, how hard it can be to find one silly backpack (or
lost shoe, missing
assignment, etc.) and yet there is so much stress is associated with it.
The thought crossed
my mind that I could say a prayer and ask for help in finding it, but I
dismissed it feeling
like this was something to small to trouble God with.
Yet as time passed I realized I was not going to find it. So I began to
ask for help.
I began by apologizing, saying, "I'm sorry to bother you, because I know
what you're
doing really matters." No sooner had those words left my mind when the
sweetest thing
happened. Immediately into my mind came His answer, "What you are doing
'really
matters' too." I had to stop and smile. It dawned on me that all the
little things (and big)
we do for our children do not go unnoticed. I realized how even finding
a backpack for
David mattered to God. And how I, as his mother, am making a difference
for good in his
life.
I thought of the many times I have been surprised at the coincidences in
my life.
Times people have been there just when I needed them or someone reached
out to me and
they may have not even known I was hurting inside. Then I remember
something my
daughter Catie says,
"A coincidence is God's way of remaining anonymous."
Okay dear friends, now for the continuing saga of my journal to you. The reason this month has been hard for me is because of the little things. David was having some behavior problems in school (calling the cute girls 'honey', being late for class while he took his P.E. clothes to the locker, not making play-doh planets for science and not
joining in when he should, calling some teachers 'Bubba", etc.) Not big things, but ones that had teachers frustrated and they needed to vent. The only problem is some days I
take negative feed back better than others. This was not one of those days.
Just once I want them to tell me some good things about David. So our meeting began. Negative feeds on negative, and before they were done with me, I felt like I had
wasted the last fifteen years of my life. I wondered why I tried so
hard. I am thankful for
one teacher who was obviously upset by the negative things being spoken.
I half expected
him to join in telling what David had done wrong in his class. I was
trying to be strong. I
was trying to acknowledge their challenges. But with each thing the
said, my heart sank
deeper and deeper.
Then Mr. Glover spoke. He said, "Up until about 10 minutes ago I was
feeling
pretty good about things. (this was where I thought he would tell his
troubles with
David.) To my surprise he didn't. His voice choked with emotion and
with conviction he
said..."I want you all to know that having David in my class has been the
best thing that
has ever happened to me as a teacher and to my class. I can't imagine my
class without
him!" He went on and my heart melted, yet all I could do was cry. I
left that meeting
with my heart broken. I felt so thankful for one teacher who could see
David for who he
was and accepted him just for that. I struggled with why it has to be so
hard for parents.
And I consider myself one of the stronger ones.
I cried myself to sleep that night. Their words echoed in my mind long
after I
should have fallen to sleep. I thought, "They have no clue." They will
never understand
what we as parents go through. From the moment our child is diagnosed we
fight battles
for him, beginning with life itself. We plead with God and the doctors to
save our baby's
life. We become intimately aware of procedures like "cut downs" so the
doctors can keep
his veins open. We pray he can live, and yet we are so afraid, wondering
if this might be a
little more than we bargained for. We don't think we can do it. But we
do.
Then we go to therapy. We learn words that are foreign to us
like developmentally
delayed, hypotonic, trisomey 21, polysythemia (too many red blood cells),
necrotizing
endo-colitis (his intestines are sloughing off) and we even understand
acronyms like IEP,
ASD, VSD, P.T., O.T., L.R.E. and D.D.D.
We proudly show off when our child can walk at age two and a half,
knowing full
well our friend's kid walked at a year. We know what it feels like to
see our 21 month old
baby undergo the most invasive heart surgery and lay in the ICU in so
much pain that it
hurts us physically so they can fix his ASD.(atrial septial defect). We
know the pain of
coming so close to death, that from that moment on something in us dies.
We hold on to
each minute, wondering how long God will let us keep him. We bargain
with God though
we know that is not the way He works, yet we bargain anyway.
We will never forget every feeling, emotion and sound we experienced the
very
moment we realized our baby wasn't doing so well. When we asked "What's
going on?",
as the crash team surround him, the doctor replied, "We're losing him,
go call your
husband!" But instead we go out into the empty hospital hall way and
yell at God. We
remember the prayer we said the night before, closing with "Thy will be
done." We cry
and tell God that we didn't mean it. If His will is to take our child
then we want no part of
it. We yell and threaten God telling him if he takes our son, we will
never speak to Him
again. (Poor God.)
When he lives through all of this we will never be the same. We then
begin to pray
again for our son. We pray that one day he will walk. Then we go crazy
when he runs
away. But we still go on. We learn to talk to legislators. We become
outspoken
advocates for our children. We hate words like 'mentally retarded' and
we appreciate
kinder words like 'handicapped'. Somehow that is a little easier to say.
We grieve, not because our child has a disability, but because of the
way it feels
when we have to validate his very existence to so many. We see his
beautiful brown eyes,
they only see the almond shape. We hold his tiny hands and all they see
is the "Simian"
crease. We are able to look beyond the disability and wonder why they
can't.
We become mother tigers, ever ready to fight for our little one. And
that's not like
us. Before our kids were born, many of us were more shy than assertive.
We didn't really
want to play this role, but what choice did we have? We wanted the
world to be a good
place, a place where he could belong. But something happened the day our
baby was
born. That innocent young mother who went into labor, never returned. In
her place was
a mom who is not so innocent. She becomes seasoned. She is a mom who
will go the
distance for her child...against DDD, against the school system, against
the world. They
will knock her down and often she will feel beaten. She will want to give
up. But then she
looks at her son and she knows she can't.
My precious friend Cori Suman, said our strength as parents, is that
we are not
'objective' when it comes to our child. We love him beyond measure. We
see him as he
truly is. We look beyond his disability. We are the only ones who really
care about what
happens to him. Maybe that is why we fight so hard. Each one of us made
that silent
promise to our child at birth. We told him we though we were not that
good, and though
God could have chosen better... we were all they had. And for what it
was worth, we
would do our very the best.
Are we crazy? Yes. Why else could we get the passion to do what we do,
over
and over again, when any sane person would have given up long ago? Of
course we care
what our kid's opportunities are! We know each day of his life, shapes
him and molds
him. We know inclusion is an important part of that life. We know his
heart. We see
something teachers, professionals, and the world in general will never
see. We know, no
matter how disabled our child might appear to them, he is a great kid
with so much to
offer. We can not help but love him. We will fight to the death for
him..
As I talked to Cori she made me cry. After losing Garrison she has gone
to
counseling. She came to the understanding that the hardest thing, the
thing she hoped for
the most, was something that never happened. She said Garrison looked at
all people
beyond who they really were. He looked upon their hearts. He loved them
unconditionally. Her dream was that one day, others would be able to
look at Garrison in
the same way. To see who he really was and love him as unconditionally
as he loved
them. Very few did. ( They were called mothers of children with special
needs.)
I called my friend Kris Holladay and cried on her shoulder. She lost
Kari 10 years
ago but a mother never forgets. She has since adopted Savannah, who has
special needs
as well. (Ya get hooked on this ya know!) As I told her my tale of woe,
she understood.
I cried as I told her how hard my meeting was and how much it hurt. I
cried as I
told the teachers I knew, that in a way, I was trying to put a square
peg( my precious
David) into a round hole (our not so perfect world.) I knew there would
be challenges.
But I could see no other way. Do I just let him go to segregated class
the rest of
his life. Sure, it would be easier on them and he would be watched
over and protected
but what would he learn? And what would the other kids learn? I was
upset with them
and said, "God forbid any of you ever have a child with a disability!"
As I talked with
Kris, she put it into perspective for me. She said...
"I would not wish having a child with a disability on my worst enemy.
"But I would hope for it for my best friend."
Do you see why I love her? The next morning after my meeting I was
still crying.
I sat down and wrote a letter to the teachers. Forgive me for being so
personal but I
wanted to share it with you. I know you too will one day have to fight
the fight. In my
imaginary life things will be different then. But only if our voices are
heard.
----------------------------
January 22, 1999
Dear Teachers,
Eight years ago I founded a parent support group for families who have a
child
with Down syndrome. I know how hard their journey is going to be. But,
through my
meetings and my newsletters, I try to give them hope. I try to let them
know that though
they feel inadequate to the call, I know they can do all that is
necessary to help their son or
daughter fit into this world. A world that not so long ago put these
kind of children away.
I tell them God will give them the strength to rise to this challenge
that is theirs. Now I
am not so sure.
" If a patient stops expressing hope, it is usually a sign of imminent
death."
Elisabeth Kubler Ross
"Often others seem to feel a special responsibility to puncture our
hopes. They
say things like "You know she will never learn to read," or "You need to
accept that he
doesn't know what is going on around him." or "He's doing well now, but
he will reach a
plateau."
They would say we are in denial, that our dreams are "false hopes," from
which
we must be corrected. God forbid anyone should go around entertaining
false hopes!
But, in a certain sense, what other kind of hope is there?
Hope is the thing that is willing to take a chance on the future. And
who is
audacious enough to say what the future will bring? Hope is the capacity
to see
something on the horizon that we are willing to move toward. If our
hopes get us from
today to tomorrow, and in that new day we are ready or able to deal with
something we
thought we couldn't face, then hope has done its job. There is a worse
thing than false
hope. It is no hope."
from Changed by a Child by Barbara Gill
It is 5:45 a.m. I didn't sleep very well last night. My heart feels so
heavy and I
need to share some things with you that I wasn't able to tell you
yesterday at our meeting
as we discussed David's progress (or lack of it) as your student.
I don't even know how to say this for fear of hurting you, or making you
think I
haven't appreciated what you have done for my son this year. I do. One
thing I am glad
of is that David is mentally retarded. I am thankful he does not fully
understand how
different he is.
I thought a lot about your words last night. I know there are
frustrations. When
he was in kindergarten, I fought the system so he could go to his home
campus with the
kids he had grown up with and attend a 'normal' kindergarten. A teacher
made a
comment about me. She said, "The reason Mrs. Johnson is acting like
this, is because she
hasn't gotten over the guilt of having a retarded child and she is trying
to pretend he's
normal."
She will never know how her words hurt my heart. Since the day David
was born
I have done all in my power to let him live as normal a life as he could.
I did not let him
go to a Special Ed class, being segregated from his peers. I have always
had him go with
the other typical kids. It has not been because I am unaware of his
differences or think
there is any way they will go away. I have done this because I believe
that he, like any
child, no matter how handicapped, belongs in our world even if that makes
the rest of us a
little uncomfortable. Does it take a little bit more out of me as a
parent or you as a
teacher. Yes, I wish it were not so, but that is just the way it is.
I guess the difference between you and me is that David is a blessing I
did not ask
for. I had no choice but to be his mother. His birth broke my heart. I
didn't know that in
time I would not only love him but that he would teach me.
I don't want him to be a disruption in your class, but at times I wonder
if you really
have caught the vision of what this is all about. It was mentioned that
one student had not
completed ten questions because he was involved with trying to help
David. The real
learning that is going on here is not really what you think it is.
Though the students are
learning the concepts you are teaching them, they are learning something
even more.
They are learning, by your loving example, that each one of us belong in
this
world. Not just in a special class where they put you 'with your own
kind.'
Forgive me for being so out spoken with you. I just need to tell you
how I feel.
Yesterday the hardest part was that your words took me down a few
notches. You words
took away from me the one thing I have been holding on to for 15 years.
Hope.
David will not be attending school today. I am doing some soul
searching and I
need to sort out my feelings. If there are those of you who feel the
challenge of having
him in your class is too great then please let the principal know. I
don't know what I am
going to do. I need to find a way to feel better about me and about him.
I hope that if in the future you ever have a child with special needs in
your class, I
hope you will be mindful of how powerful your words and your actions are.
If you do not truly love that child, they will know it. Someone once
told me
regarding his struggles in his Sunday school class," He's not learning."
The words that
came from my mouth, came from my heart..."He's not here to learn, he's
here to teach."
I believe his purpose in being your student was not just to see if you
could teach
him the 8th grade subjects geared down to his level. I believe he was
also there to teach
you and those students involved with him what really matters in life.
Love, patience,
humor, compassion. I am sorry for the trouble he has given you. I
wish I had all the
answers. I do not. But I hope in some future day no other parent will
have to walk out of
a meeting feeling like I felt yesterday.
Thank you for listening.
Gina Johnson
..........................
(P.S. I'm doing better now. Thank you dear friends
"I an not concerned that you have fallen;
I am concerned that you arise."
Abraham Lincoln
----------------------
Kid's Little Instructions on Life
by H. Jackson Brown. Jr.
Never trust a dog to watch your food.
When you want something expensive, ask your grandparents.
Never smart off to a teacher whose eyes and ears are twitching.
Wear a hat when feeding seagulls.
Sleep in your clothes so you'll be dressed in the morning.
Never try to hide a piece of broccoli in a glass of milk.
Don't flush the john when your dad's in the shower
Never ask for anything that costs more than five
dollars when your parents are doing taxes.
Never bug a pregnant mom.
Don't ever be too full for dessert.
When your dad is mad and asks you, "Do look stupid?" don't answer him.
Never tell your mom her diet's not working.
Don't pick on your sister when she's holding a baseball bat.
When you get a bad grade in school, show it
to your mom when she's on the phone.
Never try to baptize a cat.
Never spit when on a roller coaster.
Never do pranks at the police station.
Beware of cafeteria food when it looks like it's moving.
Never tell your little brother that you're not going to do
what your mom told you to do.
Remember you're never to old to hold your father's hand.
Listen to your brain. It has lots of information.
Stay away from prunes.
Never dare your little brother to paint the family car.
Remember the two places you are always welcome,
church and grandma's house.
---------
Sharing Down Syndrome Arizona ! Inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
602-926-8685
(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