Come share my joy?

Make video montages at www.OneTrueMedia.com

a little montage tribute to some very special angels in our lives. And theres a real nice shot of Ciarra hitting a BIG ball a few nights ago in the playoffs. I hope you will take heart and hope from this. And please make sure you catch what happens AFTER she comes around home plate...when the kids meet her at the dugout door. This video has been a real joy to make, it is emotional and sentimental and just JOYFUL for me. I was so afraid to try letting her move up to pitch baseball. And once again, my precious and beautiful little girl has proved she is in FULL control.

PS
See the guy in the pic with her? His name is Corey. I never knew him till baseball started. He is the dad of a little boy named Devin on the team. NICE little guy, sweet as can be, and a REAL good player. Anyway, Corey was at the early practices, and I was trying to make sure Ciarra was paying attention enough, worrying way too much cause she was fine. He asked me if I felt comfortable with him being the extra pair of hands IF needed for her. Of course, then I could take PICS
I didnt expect him to do it all season. But he and Ciarra took a real liking to each other. He called her his batting buddy, and she was smitten. Wasnt long before Corey was out there whenever she was, coaching her on, with NO ONE asking him to, praising her at every step, reminding her the few times she needed it, and being her own personal coach in a way. They have made this bond that is so cool, when she heads out to the field now she looks to see where Corey is. He gives her just enough space, but is quick to remind her "throw to that base, run to third" etc. She was the Pitcher for a few weeks in the beginning (they trade off) and he stood guard near her in case a line drive came too fast for her to stop. The one time one did, by the way, she stopped it and kept two runs from scoring. He was as proud as *I* was. The games are usually at night, when Jim is still at work. It seems like Corey realized that I wanted to just be mom, but was too worried and trying to make things go smoothly for everyone, and he just stepped in. He is gentle, sweet, and so kind to both of us. He has made this whole thing go like clockwork. He reminds me every game how WELL she is doing, and just takes it for granted that he will be out there if she needs him. It lets me be MOM, and relax a bit. Sometimes you forget just how kind people can be. I feel like Ciarra has an ally in the world now, and I kinda do too. I hope he coaches next year.

The least of these

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=2946323n video
2 dozen Iraqi boys with special needs were rescued from an orphanage that had left them tied to their beds, unfed, unwashed, untouched. The story is breathtaking in its beauty, even in the horror of it there is so much hope. Jim woke me up this morning telling me about it, his voice was choked with emotion. I searched online until I found it. And then I knew why he couldnt tell the story without crying.




On a daytime patrol in central Baghdad just over than a week ago, a U.S. military advisory team and Iraqi soldiers happened to look over a wall and found something horrific.

"They saw multiple bodies laying on the floor of the facility," Staff Sgt. Mitchell Gibson of the 82nd Airborne Division told CBS News chief foreign correspondent Lara Logan. "They thought they were all dead, so they threw a basketball (to) try and get some attention, and actually one of the kids lifted up their head, tilted it over and just looked and then went back down. And they said, 'oh, they're alive' and so they went into the building."

Inside the building, a government-run orphanage for special needs children, the soldiers found more emaciated little bodies tied to the cribs. They had been kept this way for more than a month, according to the soldiers called in to rescue the 24 boys.

"I saw children that you could see literally every bone in their body that were so skinny, they had no energy to move whatsoever, no expression on their face," Staff Sgt. Michael Beale said.

"The kids were tied up, naked, covered in their own waste — feces — and there were three people that were cooking themselves food, but nothing for the kids," Lt. Stephen Duperre said.

Logan asked: So there were three people cooking their own food?

"They were in the kitchen, yes ma'am," Duperre said.

With all these kids starving around them?

"Yes ma'am," Duperre said.

It didn't stop there. The soldiers found kitchen shelves packed with food and in the stockroom, rows of brand-new clothing still in their plastic wrapping.

Instead of giving it to the boys, the soldiers believe it was being sold to local markets.

The man in charge, the orphanage caretaker, had a well-kept office — a stark contrast to the terrible conditions just outside that room.

"I got extremely angry with the caretaker when I got there," Capt. Benjamin Morales said. "It took every muscle in my body to restrain myself from not going after that guy."

Before the soldiers left the base, he said he had to prepare them for what they were about to see. And most important of all, he had to remind them of their training and discipline, so they did not bring the name of their unit into disrepute by taking out their anger at those responsible for hurting these boys so badly.

Captain Morales knew the rage they were feeling because he felt it himself. But they did the right thing, he assured me, and handed this over to the Iraqi authorities to deal with as they saw fit.

He also told me about one soldier in particular that had been especially good with the children.

"Lieutenant Smith was amazing," he said, as we poured over photographs that showed Jason Smith brushing some of the children's teeth. He really was very good with the children.

When I interviewed Lt. Smith, I found out why: he is trained as a special education teacher. His wife is a special education teacher and her brother is a special needs boy.

So when faced with this terrible situation, Lt. Smith was happy to do the things for these boys that he already does at home for his brother-in-law. This quietly strong and gentle young man knew exactly what these boys needed – a human touch.

And that is what struck me as I watched the soldiers interacting with the boys at the orphanage. They were desperate for that human touch, just a moment of love and attention.

As I was standing there in the crowded room, soldiers and boys and Iraqi social workers all around us, one of the boys came up to me and reached out with both his arms. I leaned over and met his embrace and before I knew it he had lifted his legs off the ground and wrapped them around my waist. As suddenly as he had presented himself before me, he was wrapped in my arms, and I just surrendered. I let him snuggle into my neck, and breathe in the smell of my perfume which he really seemed to like.

As I stood there holding him, watching these boys with various levels of disability, some of their wrists scarred by the marks of the ropes that held them, I was overcome by how forgiving they were. I had the feeling that anyone could have beaten them with one hand, embraced them with the other, and they would have welcomed the embrace.

http://www.cbsnews.com/stories/2007/06/18/notebook/main2946477.shtml

They must have seen them as non-human to treat them this way: to see them growing weaker and sicker every day and do nothing to help them; to stand by while their lives slipped away into the filth and heat and misery of neglect. They had to be non-human in their eyes, for who would treat a human that badly?

I am just stunned, reading and seeing all of this. As Ciarrasmom, my heart aches. As an American, I am proud of our young men and women over there who put down their guns and came to the aid of the most fragile. As a special needs parent, I am angry, shocked, hurt, and determined. I want to help. HOW can we help? These boys have been moved to another orphanage with better care, for now. But they cannot stay there long. Then what? Who will hold them then? Your suggestions are welcome.

For her Birthday this year...Ciarra wants

A BABY DINOSAUR!

Class of 2007!

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Assorted Poems

I Hear You Have An Angel

I hear you have an angel
a baby boy like mine
and though it's really scary
you will celebrate in time
the things that you believe now
will change and will become
the extra special parts that make
your extra special son.
I just started this same journey
Though I'm ahead of you on the path
there are a few things I've learned,
and I DO know you will laugh.
You see, an extra chromosome
is not what I once thought
it seems to be the one on which
purity is brought.
And though people will say they're sorry
(and some wont know what to say)
I will be here for you
when you're ready,
and I can't wait!
There is a special bond you see,
between families like ours,
a joy found in the living
and a peace that fills our hearts.
Your son is more than just a child,
he's a tiny teacher, too.
And scary as it is right now,
you will soon feel as I do.

My Child My Love My Life
I wish the world could see you as I see you
Wish they knew the joys you've brought to me
So many people quick to judge us
and see you as someone who shouldnt be

They tell me that your life is not worth living
if they were I, they would have never let you live
They cannot know the thing it is that we know
They will never know how much you have to give

They talk a lot of sacrifice and burden
They imagine that your being is our loss
How can they know you saved me when you found me
when I never even knew that I was lost.

True enough, my world has changed forever
nothing in it is as it was so long ago
Your entry in our world has changed so many things
but none so much as they have changed my soul.

Why do we live our lives at all then
if there is some race that we must finish first
Why do we deny ourselves it all then
we drown so that we may quench our thirst

You taught me to stop and smell the tulips
they are different than the roses, this is true
their scent is in my every pore now
I never would have known them without you

To all the many people who would not choose you
who think your life is somehow tragedy
I say you have outlived them and outloved them
I am grateful God chose you just for me

You love your life and everyone thats in it
you shine your light without knowing that you do
Illuminate the darkness with your sparkle
my child, my love, my life, thank God for you.

Danny's Poem
through the long and winding road
over seasons and through the years
you alone, the distance walked
no other sound but your own tears
silent footsteps in the dark
searching for the path to tread
carrying a load no one could match
never begging that the weight be shed
a mother's heart, lion strong
a mothers fears to keep
anger gnawing at your insides
best left buried way down deep
some have walked beside you
their footsteps fell off of the path
and though they sought to comfort you
their devotion could not last
some have walked before you
and though they try to shed some light
no one can ever fully
prepare you for this fight
many will walk behind you
whispering words you cannot heed
that your son is better off
where God can tend his needs
cause love is never selfish
it wants naught but to give
and a mother is not a mother
were she not to will her boy to live.
I cannot walk in front of you
I will not walk behind
but I will walk beside you
through this dark and lonely time
I wont offer words to cheer you
or sympathies or lies
I will simply be here for you
and hope you realise
that in your darkest moments
when your feet cant find the way
your friends here will carry you
and help you get through today.

Ciarra Nichole
She kisses the angels
she touches the skies
God gave her stars
to wear in her eyes.
How could "imperfect"
be used to describe
this child I've been given,
the light of our lives?
She smiles with a sweetness
reserved for so few.
How dare mankind judge her
on what she CAN'T do?
She reaches out a tiny hand
And touches total strangers
as very few can.
Some have made comments
that were truly unkind,
But once they know her,
they leave that behind.
For this is, for sure,
an angel, on earth
God wanted a messenger,
and so He sent her.
If you are given
an angel to hold
You'll see there's no worth
in diamonds or gold.
Be glad you are worthy
of such honor as this,
and thank the Lord,
that you were picked

dandy lions

I dropped Ciarra off at summer school this morning, she loves it. As we were going in the door, we passed 2 beautiful huge planters full of vibrant color. Ciarra seemed to be reminded of something, she turned to me and said "I have a surprise for you!"
We got in, and she tore off running, grabbed one of the aides and excitedly said FLOWERS..MOM...PICKED...SURPRISE. The aide wasn't sure what she meant at first, but then she figured it out. They walked into another classroom and Ciarra grabbed something off the shelf. She came running to me, hands behind her back, saying "No peeking!" I closed my eyes and crouched down, and she proudly placed a handful of brown, dead dandelions in my waiting hand. The smile on her face melted me, she was so excited. She said "you love them?" and what could I say? Of COURSE I love them. I loved them more than you might think one could love dead day old weeds. I love them because they are a gift from her, a child who finds the beauty in everything around her. I love them because, like her, what's on the outside doesn't even cross my mind anymore. To the unguided eye, what I held was a handful of weeds. As Ciarra's mom, I recognize that they are special weeds. They were picked with love. They were lovingly laid aside to be given as a gift to the mom she worships, they were forgotten temporarily, and they were remembered gleefully and given over as though they were the finest gift ever bestowed. They may be. Because, under the brown, they are still beautiful. Beneath the wilt, there is a tender heart bursting with strength and color, brightness and glory. Just like the daughter who saved them for me, they are a gift I might have passed by had I not been taught to slow down and see the beauty in the world.

Slow Down
I wanted to take a minute to share a few thoughts with you, because they are heavy on my mind right now, and because if I don’t share them they will come out in ways I don’t mean them to. Before I say anything, though, let me thank you for the multitude of hugs and the love you share with my child every day. When I see you drop to your knees to hug her in the hall, my heart goes soft. I know that it takes very special people to give their lives to this kind of work. It surely isnt easy to work with a child everyday who can be stubborn beyond words or whose speech and mind are hard to decipher.
I am writing to say that sometimes reading the words you write about her, I want to grab her up and run away with her, or somehow squish her up and keep her little so she doesn’t have to be a “big girl” anymore. I want to scream at the world, “do you see her?” do you really, really see her? Do you know what tenacity she has to even be here? Do you know more than 70% of babies with Down syndrome die before they ever see the light of the world? It takes immense fortitude for them to ever get here. Did you know that as a newborn, a heart defect nearly took her from us, and that we were even told it would be “ok” if we “let her go”? The world is tough on these kids, right from the start.
Ciarra has been a lesson in so many things for us. We have learned that slowing down and taking the time to savor every step along the way is important. Rushing through life, we missed a lot. Then came her. We have learned so many things. Like her, we have learned to slow down and really take in everything in life that God has chosen to share with us. Leaves, puddles, “paterpillars”, footprints…everything has a story and we arent so busy rushing around now that we cannot stop to find it out. Probably in your world, this is called “dawdling” or “being pokey”. To Ciarra it is all about the walk, not the destination. And we, the grownups who were graced with her presence in out home and our hearts, are learning to slow down and walk it with her. Maybe you can remember this as you rush through the days with her. Rather than seeing only the end of the tunnel, if you take your time, you might see all of the beautiful things that make getting to the end of the tunnel less important.

Another poem:

Slow Down Mommy

crazy days,
busy, full,
wall to wall days.
basketball nights
tourneys, coaches
too late nights.
Big boy, little girl
fighting in the car
muddy boots on my seat
scolding, cajoling,
and here we are.
crazy, crazy days.
Hurry up,
bus is coming
rush and run
toast is burning
drink your juice,
grab your boots
crazy crazy days.
Slip sliding running
bus is coming
we made it
there they go
time to rush to work
I see footprints in the snow.
Tiny footprints, bigger ones
side by side
my heart swells
rushing rushing
through my life
then stopping,
the tears well
Slow down Mommy,
wait for me
my steps are tiny yet
pretty soon
they'll be gone away
there'll be no bus to catch.

Paris Hilton is scared?

Some of you may know this, and some dont, but anyway....when I was 17 years old, I went to the state Jr. Exhibition contest. I took 2nd place. My mom and stepdad had recently divorced, and my brother had moved away to join the Air Force. Just my mom and me at home. And our relationship was NOT good. I dont remember why now, but she didnt even bother going to the Jr Ex (speech) contest, she wasnt very involved with that stuff anyway. I was so proud, I won on a story I wrote myself. I walked home thinking maybe she would be proud of me for once. Instead, I found her sitting in the dark at the kitchen table. I knew when I opened the door I was in trouble. Keep in mind, I was straight A, high honors, NEVER smoked, drank, used drugs etc. I did have boyfriends and she called me all kinds of names over them. But I had been dating Jim for a year and then some by then, I was 17. Anyway, she had been snooping through my room, which she ALWAYS did. She would tape up notes I had shredded, read diaries, every little thing I did was scrutinized. Apparently she had found a note I had written several YEARS before, about a boy i liked a lot. It was full of nonsense and teenaged bs and stupidity, asking my friend if I could get pregnant doing this or that or whatever...I was 14 when it had been written. I remember thinking "I was just being stupid, it wasnt stuff I had DONE!" But anyway, she accused me of all of it. The first words she said when I came in, in this sickening heavy voice was "Sit down". My life changed forever that night. By the end of it, I fought back. I was tired of being seen as BAD, I was a good kid, I had just won this big fancy award, if she would have bothered looking she would have seen my name on the news.
An hour later, I was being handcuffed and stuffed into the back seat of a patrol car. I had made the mistake of not leaving when she shoved me out the door and locked it. I kicked it in and went to my room to get my stuff, my puppy and a few other things. I was halfway down the stairs with my hope chest stuffed with clothes and papaers etc when the cops came in. I tried to explain, but there was no explaining. She wanted me arrested for criminal trespass. When the cop grabbed me off the stairs, I kicked the hope chest down the rest of the way where it went through a wall. So they added vandalizing to the charges. I was booked into our local jail, then transported to the city jail in the next town. I went to a school with a zero tolerance policy, my arrest got me kicked out...21/2 weeks before graduation. I lost my scholarship and my diploma. I wasnt allowed to march with my friends. I didnt graduate. I was SEVENTEEN. Instead, I got fingerprinted, tossed in a cell with a sneer "You ought to feel right at home here, your daddy likes this cell real well." I had done everything in my power to beat the odds, and to be someone. And it didnt change a thing.

I sat in that cell for days, until Jim bailed me out. He picked me up in his truck and drove me 300 miles south, to where he had just moved for work. And that was that. And I didnt graduate, and I know all about jail, and being scared. And I didnt have what that little twit has, a family fighting for me. Or a drinking problem. I didnt speak to my mother again for years. Then we did for awhile, then we stopped again about 7 years ago. Then we started again about 2 years ago. I forgive her, but I will never forget what she cost me in my life. I never trust her or anybody else completely. Paris Hilton doesnt have a lock on being scared, or sick, or lonely. She had EVERY reason to stay straight and be grateful for the life she had, priveleged and spoiled. And she has NO right to any better treatment than the 17 yr old *I* was, scared and shivering in a cold cell watching my entire future fly away for NOTHING.

Heartbreaking. Irritating. Mostly heartbreaking.

took Ciarra in to school today, she has her spring concert, and it is a BIG deal to her. All dressed up, hair looking pretty. :) She got to her reg classroom, and she usually has time to be there for a bit, but we were late, so she was expected in SPec Ed room. She did NOT want to go. When she walked in the door, 2 little friends walked over and hugged her, told her she looked beautiful today. They were just starting to go sit and read a book together when the teacher said "Ciarra you HAVE to go". Her friend Renee tried to ask if she could walk with her, teacher said no.

Poor Ciarra, she is so sad. She wants so badly to stay there. She loves the kids there, and they her. So anyway, we walk down to SE, and she is greeted with smiles and hugs there too, but she wants to go back to her classroom. And she has to go to Special Ed instead. And I CANT change this right now, and it breaks my heart.

I know this is not going to sound right, but...she is SO high functioning. Kids who dont do half of what she does are included in other states...why not HER? It kills me to see it, she HATES it. Sigh...I could just cry, she is so capable, if they would just TRY.

Then I got home and got an email, Center for Community Inclusion will be observing her the week of the 9th. We had asked for Inclusion for her for next year at her IEP, and been turned down flat. The school "doesn't DO Inclusion". I had an advocate with me from Maine Disability Rights Center, she had suggested using The Maine Center for Community Inclusion. We didn't think they would have scheduling time enough to observe her this year. The school said we could wait till fall, when she would already be a 3rd grader, not Inluded. Then we could "address concerns". I wanted it done this year, and a plan for Inclusion to be in place BEFORE 3rd grade. At least the school agreed to have her assessed. It costs a LOT of money, $700 bucks per hour. I would give them my right arm if they could make this work for Ciarra. I assume the school will be paying for it. I just hope and pray I get some support to keep her included. I am sad for her today, and I feel powerless. All I can do now is hope and pray CCI helps make the school understand. This child CAN be in a regular classroom, SHOULD be in a regular classroom. She deserves the chance, and it is the LAW. If CCI cant help us work it out, I will have no choice but to go to court. I hope it doesn't get that far. I just want to not have to fight. But make no mistake. I WILL fight.

IEP Goals for this year-INCLUSION!

“Only when the nature and severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. . . .”


Inclusion
involves bringing the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students). Full inclusion means that all students, regardless of handicapping condition or severity, will be in a regular classroom/program full time. All services must be taken to the child in that setting.

Those who support inclusion believe that the child always should begin in the regular environment and be removed only when appropriate services cannot be provided in the regular classroom.

In one manifestation of inclusion, the special education teachers would come into the mainstream classrooms and work with the students in that environment. Thus, there would not be elimination of special education services, but a change in the location of their delivery.


Mainstreaming
the selective placement of special education students in one or more "regular" education classes. Proponents of mainstreaming generally assume that a student must "earn" his or her opportunity to be placed in regular classes by demonstrating an ability to "keep up" with the work assigned by the regular classroom teacher.

Those who support the idea of mainstreaming believe that a child with disabilities first belongs in the special education environment and that the child must earn his/her way into the regular education environment.


Section 504 of the Rehabilitation Act of 1973
Section 504 requires that a recipient of federal funds provide for the education of each qualified handicapped person in its jurisdiction with persons who are not handicapped to the maximum extent appropriate to the needs of the handicapped person.
A recipient is required to place a handicapped child in the regular educational environment unless it is demonstrated by the recipient that the education in the regular environment with the use of supplementary aides and services cannot be achieved satisfactorily.


I believe that Ciarra's school should be able to design a much more inclusive program for her with assistance from professionals who have experience integrating children with disabilities in regular classes. She will require certain accommodations, including, perhaps: an itinerant teacher trained in aiding students with developmental disabilities, the assistance of an Inclusion Specialist to help facilitate her placement, modification of the regular curriculum to accommodate her needs, and special education training and consultation for the regular teacher (depending on placement, this step would be unnecessary, with a 3rd grade teacher who is also a spec ed teacher)
Supplementary Aides and Services may include:


Providing preferential seating/Reducing distractions
Providing quiet corner/room
Adapting writing utensils
Providing assistance in maintaining uncluttered space
Providing space for movement or breaks
Instructional modifications
Teaching to learning style
Modifying materials
Providing one to one instruction
Varying method of instruction/content of lesson
Providing alternative assignments
Providing extra visual and verbal cues and prompts
Providing study sheets
Conducting as assistive technology evaluation
Allowing use of computer and calculator
Allowing use of tape recorder
Providing textbooks for at home use
Providing teacher outlines, study guides
Modifying workload or length of assignments/tests
Modifying time demands
Allowing additional time for assignments and tests
Allowing answers to be dictated
Providing word bank
Providing hands-on activities
Providing highlighted materials
Allowing use of manipulatives
Giving no penalty for spelling errors, sloppy handwriting
Following routine or schedule
Teach management skills
Social/behavioral interventions/supports
Providing immediate feedback
Allowing rest breaks
Implementing POSITIVE behavior modification plan as needed
Developing crisis intervention plan
allow unfinished assignments to be completed at home
Using varied reinforcement system
Providing circle of friends/peer buddies
Provide counseling if necessary
Providing verbal and visual cues regarding transition/staying on task
Providing study skills instruction
Providing management skills instruction
Providing agenda book
Providing visual daily schedule
Adjusting assignment timelines
Providing checklists
Giving notice, warning before change in activities
Allowing daily check-in with case manager or special education teacher
Staff supports/collaboration
Providing one on one aide
Designating adult staff member to listen and provide support
Providing small group instruction
Using cooperative learning groups
Testing Accommodations
Allowing answers to be dictated
Allowing frequent rest breaks
Allowing additional time
Allowing oral testing
Giving no timed tests
Giving choice of test (multiple-choice, essay, true-false)
Accepting short answers
Allowing open book or open note tests/Shortening test
Reading test to student
Providing study guide prior to test
Highlighting key directions
Giving test in alternative site
Send home notification of upcoming tests at least two to three days in advance
Utilize a slant board as needed






1: Size
Modify the number of items she is required to complete or expected to produce. The school Neuropsychologist suggested that Ciarra could complete about 1/3 of the work her peers could do in a similar amount of time.
2: Input
Modify how information is delivered to her (visual cues, etc)
3: Time
Modify the number of minutes, hours, or days for completion or participation
4: Difficulty
Modify the level of difficulty of an assignment to fit Ciarra’s needs
i.e.: rather than labeling each body of water and the continents, have her color all of the water blue and all of the land green. Or label State names instead of names/capitols.
5: Output
Modify the way Ciarra must produce information, keeping in mind speech is difficult for her. She LOVES computers, and may be able to present better using a computer program such as Power Point, etc. (with adult help) or other less verbal methods.
6: Participation
Modify the amount of participation required of her in specific activities without excluding her from
those activities
7: Support
Provide additional support and prompts

Suggestions for Specific Modifications:

Community & Classroom:

-Place Ciarra in a small group of peers who are strong role models and empathetic

-Clearly answer questions about Ciarra only outside of her presence when asked by students. Feel free to discuss Down syndrome and its effect on her if they ask.

-An assignment book that clearly shows what she has to get done daily and also weekly, and a daily list of specific activities and responsibilities. Please include scheduled specials such as gym or art so she can plan ahead for clothing needs on those days. (i.e.: sneakers on gym days) She could keep a similar daily list taped to her desk right in front of her, so she knows what is expected of her. When she gets those things accomplished, she would earn points for the day which can be put towards a reward, the reward would be an activity she would choose, but would have educational merit. For instance a game played with a teacher/aide/other student, some time for coloring (which is a huge need for her) or computer or reading time for a few minutes.

-Use "first" and "then". "First" is usually the work/task she will have to accomplish, and the "then" is the reward that she is going to get. If it’s possible, you should set up her schedule so that she can see a bit of incentive. Ciarra will need support in transitioning, including countdowns or 5/2 minute reminders

- Ciarra will need support in developing relationships. The teacher can help by nurturing friendships that start within the classroom. If she has a friend in the class, she will find it easier to learn, and to help her to work more positively and productively. Social bonds she makes at school encourage her, and not having them makes her a reluctant learner. Sometimes it will be difficult to nurture her friendships. She has not learned how to be a GREAT friend yet. She needs direction and help opening the conversation, as though she were a much younger child.

- Have peer partners at recess for her for when she might require some extra help getting involved in play activities.

-Friendship groups will be INTEGRAL to Ciarra’s 3rd grade experience. She thrives when she has friends around. She has become somewhat shy this year, and much less secure in herself. Much of that is speech related. Smaller, quieter groups will help her feel successful.

- Communication notebook is VITAL. It is often the only thing I have to know about her day. She tells me VERY little, and often cannot remember things in any event. Having it in place helps me to know what is going on and not feel so lost when it comes to her education. It is more appreciated than you can imagine.

- Parent meetings help me to pre-teach things you will be working on, and to reinforce them at home as well. They also help me to talk with her about her days and reinforce things you are working on behavior or social wise. It would be very helpful to have such a meeting every 2-4 weeks to stay on top of things.

-Curriculum: I would like a copy of the curriculum (and modifications expected) if at all possible prior to each quarter. Again, it helps me pre-teach, as well as allows me time to purchase or borrow books that might help her to understand subjects better.



Math:
-we are using MathUSee at home, if you would like to learn about it, please just ask.

-use a lot of manipulatives

-allow use of a calculator

-In large group activities, include her by using a skill she does have, i.e. counting: (Make it so that the counting is part of the structure of what's going on rather than creating a special thing for her to do.) Make sure that she gets a role in the group where she’s doing something she can do versus leaving her out for not understanding it all.

- a simple modification would be giving Ciarra photocopied pages from the class textbook, if/when the students have to start copying from the textbook. Photocopying and enlarging the page will help her overcome the difficulty of copying problems or directions and of organizing her work as she follows along.

-A production or method sheet to help remind her how to use the format of the calculator…i.e.: 4+2=6 or 6-3=3, visual cues that can be taped to her desk as a reminder of the process used.

-Notes provided to Ciarra of what the teacher will be writing on the board, broken into explainable steps. (In hand prior to the lesson)

-fewer problems, simpler problems

-peer groups with patient, friendly, capable students.
- Provide individual math instruction daily during half of the regular math class, with the remaining half to participate with regular peers.

Reading & Spelling:

-photocopy any notes for her ahead of time

-other children might have to take a book or a paragraph of information and write a paragraph about it, you might give Ciarra a closed passage with the words underneath. That way she just has to pick the words to put in the right place.

-during silent reading...a better reader could sit quietly in back of the room and read aloud to/with her.

- take words off the main list that students are using, and modify those words by taking the root word or by taking several words off the list.

-Send home spelling words on the preceding Friday.

-let her work with a friendly peer, to give spelling tests to each other before the big day, to practice.

-do not over-correct for spelling, punctuation, or messiness.

-Ciarra LOVES to write, and is pretty good at it.




Social Studies/Science:

- get a book for Ciarra that is at her reading level, but that would be of high interest to her that deals with a topic being discussed in social studies or science. That way she could begin to understand the content of the book, plus the reading level would be a comfortable one for her. We can do a great deal of research at home, and have lots of manipulatives and CD ROMs if only we know what she is studying.

- photocopy any notes for her ahead of time.

- a simple modification would be giving Ciarra photocopied pages from the class textbook, if/when the students have to start copying from the textbook. It will save on exhaustion levels and stress.

-Ciarra is very very visual, if you can show her something, she will understand it better.

-allow Ciarra an alternative way of presenting for reports, etc. that does not rely too heavily on speech, which she struggles with

Specials:

-Art has always been a comfort for Ciarra. It is something she loves, and something she spends a great deal of time doing. I have been told by several people that Ciarra gets frustrated and bored in Art class. For whatever reasons, her specials have not been modified. Art could easily be modified to be something she enjoys again. She will likely not be terribly interested in the history of art, but she can be involved in art in a way that suits her developmental ability. It is a time that could be very beneficial for her stress wise.

-Music is another favorite. What can be done here?

-PE Mr. Reed continues to find ways to modify his program and instruction to meet Ciarra where she is. My only concern is that her APE be structured at a time when it doesn’t cost her classroom time. Perhaps during recess if at all possible, would be better?

-Guidance Guidance class may well begin to be over Ciarra’s head soon. However, I also think that there is a great deal she can get from it. I suspect that with Ciarra’s development lately, the discussions about bodies changing will be happening just in time.

-Library I would ask that we continue using the library bag, and that Ciarra be reminded about her library responsibilities often. At one time, we had a photocopy of the books she brought home, together with the pink bag Mrs Ring gave her. Worked wonders!

BUS- I would like to see Ciarra’s IEP reflect some situations on the bus. Our driver this year has been Mr. Dean. He is a wonderful, loving man who genuinely likes Ciarra and Jesse. But as much as he tries, he cant seem to stop himself from over-protecting Ciarra. He often makes her sit towards the front, when same age peers (and her 2 best friends) are sitting nearer the back. She is fine. As far as I know, she is no more a behavioral concern than the other 2nd graders. I would like the bus company to be reminded that she deserves the same freedom to select her own seat as the other kids. She gets very angry when he makes her come back up front. And her brother gets quite defensive as well. He says “Mr. Dean treats her like a baby!” We appreciate his concern, but as in all things, we want her to be treated like a regular kid.


Some general suggestions:

I will work with you to achieve Ciarra’s goals. I want to be a partner in her education. She came into Kindergarten well-prepared, and that was due in large part to us being able to guide her education fully up until that point. We have lost that connection over the last several years, and are eager to regain it. We recognize that having Ciarra fully included is no easy task. In fact, it is downright scary to consider how badly it could go. But we have faith in you and in her. We know that someday she will have to live in the real world, not seperate, but equal, and we believe the best way to prepare her for that is to start now. We need you to believe in her, too.

If at all possible, having a set of text books at home would reduce the need for her to carry them back and forth. Her size would make doing so difficult, as well as her organizational abilities.

Goals and objectives for Ciarra should be agreed upon for each instructional unit before the unit is taught. Some of the goals will relate to the concepts and content of the unit. Some will relate to the strengths and needs that were identified by the team, and agreed upon as goals and objectives in the IEP. The teaching of the IEP objectives should be embedded in the regular lessons and routines of the classroom. They do not need to be taught at a separate time, in a separate place.

The indications of learning and growth may be different from those of the other children in the class, but they must be recognized by the teacher as valid. If the teacher values Ciarra’s progress and abilities, then the children in the class will also value them. Ciarra does not have to learn the SAME curriculum as the other children, just the same subject matter at her OWN level.

Outline the routines and lessons which the other children are engaged in on a typical day. List the outline for the day on one side of a flip chart, and then, on the other side, identify the supports or adaptations needed to include Ciarra.

There is often no need to make changes, especially to the regular routines. Only very specific areas of the curriculum will need modification.

Perhaps, a classmate might be asked to meet Ciarra at the school door to accompany her to the classroom. This would help her practice the route, and is an opportunity to build a friendship.

Consider whether adaptations or modifications need to be made to the information, the materials, and the instructional process. Decide whether Ciarra will require support to carry out some or all of a lesson or routine, and how the support will be provided.

Be sure Ciarra has a clearly defined role which truly contributes to the success of the group. She might make sure that all the members of the group are present before beginning, or bring materials to the group meetings. She might take photographs to add information to a final report, or take a turn as leader of the group

Write whatever instructional adaptations you plan to make into the daily lesson plans. This means including relevant information on the objectives, the adaptations to the tasks, and the materials needed for her to be able to participate in each lesson. If a substitute teacher or assistant is called to instruct the class, this information must be available.


Testing Accommodations

-Extended time to finish
-For tests requiring extended writing (essay) responses Double Time
-Separate setting
-Small group- quiet with limited visual distractions
-For tests longer than 40 minutes in length 10 minute break every 40 minutes


LAWS:

Oberti vs. Board of Education of the Borough of Clementon School District

http://www.kidstogether.org/ct-obert.htm

(3rd Circuit Court, 1993)
Upheld the right of Rafeal Oberti, a boy with Down syndrome, to receive his education in his neighborhood regular school with adequate and necessary supports, placing the burden of proof for compliance with IDEA's mainstreaming requirements on the school district and the state rather than on the family. The federal judge who decided the case endorsed full inclusion, he wrote "Inclusion is a right, not a special privilege for a select few".

The Oberti Court stated ...
"that education law requires school systems to supplement and realign their resources to move beyond those systems, structures and practices which tend to result in unnecessary segregation of children with disabilities.”

"We emphasize that the Act does not require states to offer the same educational experience to a child with disabilities as is generally provided for nondisabled children.... To the contrary, states must address the unique needs of a disabled child, recognizing that that child may benefit differently from education in the regular classroom than other students. .... In short, the fact that a child with disabilities will learn differently from his or her education within a regular classroom does not justify exclusion from that environment." "Indeed the Act's strong presumption in favor of mainstreaming...would be turned on its head if parents had to prove that their child was worthy of being included, rather than the school district having to justify a decision to exclude the child from the regular classroom."

In finding for the parents in Oberti, the court ruled in favor of a placement that was more inclusive than that provided by a self-contained placement. Specifically, the court ruled that three factors must be considered:
-The court should consider whether the district made reasonable efforts to accommodate the child in regular education. The school must "consider the whole range of supplemental aids and services..."
-The court should compare the educational benefits the child would receive in regular education (with supplemental aids and services) contrasted with the benefits in a special education classroom.
-The court should consider the effect the inclusion of the child with disabilities might have on the education of other children in the regular education classroom.

If, after considering these factors, the court determines that the child cannot be educated satisfactorily in a regular classroom, the court must consider whether the schools have included the child in school programs to the maximum extent appropriate.

[33] In Board of Educ. v. Rowley, 458 U.S. 176, 188-89, 102 S.Ct. 3034, 3042, 73 L.Ed.2d 690 (1982), the Supreme Court held that a "free appropriate public education" under the Act "consists of educational instruction specially designed to meet the unique needs of the handicapped child, supported by such services as are necessary to permit the child `to benefit' from the instruction." This court in turn interpreted Rowley to require the state to offer children with disabilities individualized education programs that provide more than a trivial or de minimis educational benefit.

Greer vs. Rome City School District (11th Circuit Court, 1992)
In this case, the court decided in favor of parents who objected to the placement of their daughter in a self-contained special education classroom. Specifically, the court said: "Before the school district may conclude that a handicapped child should be educated outside of the regular classroom it must consider whether supplemental aids and services would permit satisfactory education in the regular classroom."

The district had considered only three options for the child:

-The regular education classroom with no supplementary aids and services;
-The regular classroom with some speech therapy only;
-The self-contained special education classroom.

The district argued that the costs of providing services in the classroom would be too high. -However, the court said that the district cannot refuse to serve a child because of added cost.

On the other hand, the court also said that a district cannot be required to provide a child his/her own full-time teacher. As in many decisions of this type, no clear determination is made about when costs move from reasonable to excessive. The major message in this case is that all options must be considered before removing a child from the regular classroom.

Sacramento City Unified School District vs. Holland (9th Circuit Court, 1994)
In this case, the circuit court upheld the decision of the lower court in finding for the Holland family. The parents in this case challenged the district's decision to place their daughter half-time in a special education classroom and half-time in a regular education classroom. The parents wanted their daughter in the regular classroom full-time.

A number of issues were addressed in this decision. The court considered a 1989 case in Texas, (Daniel R.R.), which found that regular education placement is appropriate if a disabled child can receive a satisfactory education, even if it is not the best academic setting for the child. Non-academic benefits must also be considered.

In upholding the lower court decision, the 9th Circuit Court established a four-part balancing test to determine whether a school district is complying with IDEA.

The four factors were as follows:

-The educational benefits of placing the child in a full-time regular education program;
-The non-academic benefits of such a placement;
-The effect the child would have on the teacher and other students in the regular classroom;
-The costs associated with this placement.

As a result of applying these factors, the court found in favor of including the child.

Why Inclusion?:

A 1989 study found that over a fifteen year period, the employment rate for high school graduates with special needs who had been in segregated programs was 53%. But for special needs graduates from integrated programs the employment rate was 73%. Furthermore, the cost of educating students in segregated programs was double that for educating them in integrated programs (Piuma, 1989).

We expect Ciarra to grow up and get a job, maybe go on to a secondary education. More and more these days, that is not out of the question. It takes only the belief that kids like her have their own strengths and abilities, and that they deserve a chance to learn and grow like any other kid. She may never learn all of the things her peers will learn. But she will model their speech, and she will try her hardest to take whatever she can from the curriculum. Ciarra is not a behavioral concern, for the most part. Stubborn serves her well, even when it irritates us. The benefits of being taught alongside her peers are great. She is motivated by them, and in the right hands, that motivation is the key to her future.

Until a few years ago, I believed that what we had set up here for Ciarra was the best the world had to offer. In many ways, I was right. The people behind her are wonderful. But in other ways I was wrong. Time and perspective have shown me that she spends very little time in the classroom. Maybe we didn’t believe that she, or we, could pull it off. She can. And we can help her.

We, as a team, have NEVER placed Ciarra in a truly inclusive setting. We assumed, and that includes myself, for whatever reasons, that she couldn’t manage. We, as a team, have never made the effort to put into place supplementary aides and services to keep her in her classroom. It is scary, but I believe it can work. With the changes happening next year, by virtue of her moving to third grade, (new Special Ed room and teacher, new programming, new teachers, etc) it is the ideal time to change her placement.

Things I would like to see in place:

Tutoring- BS would like to work with Ciarra again this summer. Her Concept Development Therapy was a vital part of Ciarra’s preparedness for Kindergarten. She is willing to work with Ciarra several afternoons a week, and will be using the new math program MathUSee with her as well. We hope to have her on the way to catching up to her peers. Summer school has never worked for us. Ciarra is NOT a morning person.

A computer with writing program-Ciarra is beginning to use her home computer more and more as a word processor. She is very successful with it, and loves computers so much that writing stories etc seems like play versus work to her. Having a computer at school with a printer would make it much easier for her to write stories and assignments. The pc would stay at the school, and we would send assignments in on cd to transfer over.

Air conditioning in her classroom

A plan for Therapies- I would very much like to see Ciarra’s schedule done effectively and creatively. There are times and places in the third grade schedule that can be tweaked to better meet her needs. For instance, French. It makes no sense for Ciarra to be learning French. She needs to learn English first. The classroom time that is devoted to French class would be much better spent by her at Speech therapy. Mrs. Johnson has had remarkable success with her this year. Why couldn’t we plan ahead to have Ciarra go to speech while the other children go to French? It saves on her being pulled out during vital class time. If there are any other times that would be better suited to therapies, then OT is a consideration as well. If not, I would prefer that OT be pushed in.



Timing-

I want to be ready to go with plans for a successful year already in place long before Ciarra walks through the door to begin third grade. That means knowing who her teacher will be, knowing that a team is in place to support her educationally, emotionally, and socially. We cannot afford to wait again next year to get started with Friendship Circles and other supports. Ciarra struggled this year, and we dropped the ball. Having a plan to use the biggest motivational factor we have…the other children…in place will give us the jump on her year. It will allow her to get excited again and want to be there. This year has been an exercise in begging and goading and bribing her into going to school. I wasn’t on the ball, and certain aspects of her program weren’t in place in time. I cannot let that happen again. The older she gets, the harder it will be to convince her that school is wonderful, if it is not.

Concerns:

I would like to address the yearly sleepover ahead of time this year. Last year, despite my wishes being made very clear, I was not called when Ciarra started to cry and in fact cried herself to sleep. No one called, and no adult was available to comfort her, despite Candace White being in the next room, and fully capable and willing to help make Ciarra comfortable.
As this is a school function made available to the entire class, Ciarra has a right and a definite need to have someone there to look after her. Children are not individually supervised for quite some time that night, with lots of running back and forth from classroom/lunchroom/gym. With Ciarra’s eye for wandering, this is an unsafe environment for her without someone whose job it is to keep her safe. As it is a school event made available to all the children, it is a legitimate expense to hire an aide specifically for her, given the inability of one aide to watch several very active children.

I recognize that Ciarra has missed quite a few days this year. We had hoped the surgery she had would correct the problem, unfortunately it did not resolve it. She is routinely on antibiotics. The plan now is to wait a few years and then go in and surgically enlarge her sinus cavity. It is a painful and dangerous surgery in a child with such small bone structure. Dr. Giebfried is being as cautious with this as he was with the tonsil surgery. In the meantime, we continue with antibiotics much too often. She is often exhausted from not sleeping well, between the sinus/throat infections and sleep apnea, she really struggles to breathe at night. We are trying to keep her healthy, but it is a hard road. Please be patient with her when she doesn’t feel well. She is a tough little kid, but this thing has really taken a toll on her. I think about years of being sick with this, constant antibiotics, and it makes me tired. I can only imagine how she feels.

Another aspect of Ciarra’s physical and emotional well-being has been her sadness this year. She suddenly knows she is different, and she feels it very strongly. She tells me often that she doesn’t have friends. She has several very good friends, but she craves the contact and social connections in school. The best motivation for Ciarra to get out of bed every day is the prospect that a friend can come over after school. Having that connection in school, having friends there and people who are happy to see her makes ALL the difference in the world. If we can foster a community for her there, she will want to come to school, and she WILL learn. Ciarra shines when she feels loved, and she slouches when she doesn’t. Her emotional well-being is vital to her success at school, and the other children are the key. If I could ask for one thing, it would be that you recognize the power that holds for her.

Aide: Not having an aide fulltime this year has been a bad thing for Ciarra. She NEEDS an aide if she is to succeed in the classroom, fulltime.


Thank you

I certainly know Ciarra is but one of many children whose lives you touch every day. But while she is yours for a year or two, she is mine forever. To me, she is everything. She is my baby, my last child. Her success is the difference between a fulfilling and promising life and one spent alone and lonely. The education you give her now will change everything about her future. Where she lives, HOW she lives, her ability to protect herself, and her ability to enjoy the things in life we so often take for granted, are being formed every day that she is with you. Will she read and enjoy the newspaper? Count change? Live alone or in a group home? Will she find her voice and be proud of who she is, or will she struggle and feel less than capable and give up easily?

This daughter of mine is a fighter. She is a lot like her mom, she doesn’t quit easily. This year has scared me, to tell you the truth. Some of her light has gone out, and I am desperate to rekindle it. She loves to learn, she loves to be successful. But so much depends on her happiness, and right now, that hinges so much on her friendships and relationships. She needs to believe in herself again. I know that for a child with Down syndrome, she is doing very well already. But like all moms, I want even more. I want every bit of life I can grab for her. I want to take every second of learning time and make it count. I want to give her every chance to have the life I have always dreamed for her. And sometimes that means I shoot for the moon.

Friendships and Inclusion go hand in hand

The world is schizophrenic

Ciarra had a baseball game last night. She moved up to a regular pitch league, from T-Ball. It is always a big decision for us, to allow her to follow her dreams or to squash them in the interest of...I dunno...not upsetting anyone, risking her being hurt, making people uncomfortable? I am not really sure, I am just assuming some things. It is odd how you can read so many opinions online about how people claim they "really" feel, and then experience life and get a whole different take on it. If I allowed our lives to be ruled by what others think, I would hide her away from the cruelty out there and keep her safe, at home, with me. But that would mean she missed out on so many things she so desperately wants to do. And it would mean that I do, in fact, see cruelty...out there. For the record, I haven't, yet. Not the slightest whiff of it, even. One time, another parent actually said to me that before she knew Ciarra better, she was "intimidated" by having her around. Intimidated...by an 8 year old? It was interesting to have that conversation, part of me was sad and the other part of me was celebrating that she had the guts to tell me how she really felt. But that's been the extent of it, so far.

Does Ciarra ever wonder about "acceptance" and "belonging"? I have no doubt. Like every other young girl, she wants to be popular, she wants to be invited to every party. She wants to belong. In so many ways, she does. In some other ways, there is more work to be done. But most of the time, Ciarra is just one of the gang. Life will change, perhaps. Maybe we will look back on these moments that were easy and long for them, someday. But with every game, with every hit, with every smile and high-five from a friend, she is learning to take her place in society, and they are learning to expect to see her there beside them.

I don't know what the future will bring, but as scary as it is, I will embrace it just as we embrace every day of her childhood. At some point, it is Ciarra who will carve the path, rather than me. I hope that I am right to teach her that she belongs just as much as any other child out on the field, in the classroom, in the world.
So, we play baseball, and we expect that Ciarra will be treated like any other kid out there. And she really is. Sure, she needs a few more tries to do some things, she probably won't be very good this year at catching pop flies, but she is sure trying.

She got a VERY nice hit last night, and the people watcher in me was intrigued by the reaction of the fans on both sides of the diamond. ALL of the kids cheered, ALL of the parents cheered. In fact, as she rounded first base, her friend hugged her. There is this sort of unspoken pride they seem to take in her, like she is the underdog in some ways, and they are rooting her on. But it doesn't feel like pity. It feels like respect. Respect for her trying so hard. Respect for being out there, doing her best, and succeeding. I wonder sometimes if they are just surprised that she can do it, and she appeals to the better parts of them as people? No matter, really. She is out there, and she is doing it. And she is happy.





Sometimes she does things that surprise all of us. Last week, she stopped a ball cold that was well-hit, scooped it up, and threw it hard to the coach/pitcher, effectively ending the play and saving at least 2 runs. It was one of those in the moment things where her ability shined far and above her dis-ability. It was neat to watch the other kids walk over and high-five her, and to hear a boy from her team telling his mom that "Ciarra saved us on that play." Then the hit last night, and her pride as she turned to look at us, give us the thumbs up sign, and turn back around to be a part of the game she so loves. Pride doesn't even come close, and it has nothing at all to do with the hit, an everything to do with her determination to be everything she can be in this world. Ciarra doesn't demand home runs, she is just happy to play the game. But make no mistake, she wants to win as much as the next kid. She takes pride in her team, in her play, in her ability. Doesn't matter what the outside world thinks, really. Ciarra thinks she is doing a great job, and Mom and Dad and Coach do, too. And from the sounds of things last night, here in our world, in her life, she is accepted and celebrated. All I can ask is that she be treated fairly, that she be given the opportunity to be a child. All I can dream for is exactly what we are living, and I am grateful that we live in a time and place where Ciarra can just be a kid, play the game, and hear her name called out by people who care about her and want her to succeed.