Wednesday, May 30, 2007

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















Tuesday, May 29, 2007

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.

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.




Monday, May 28, 2007

Computers

I think I have created a computer junkie. 8 years old, and this kid is a WHIZ on the computer!! I have to say, I am tickled and excited. I think that knowing her way around a computer will be so beneficial for her as she grows. Right now, it is nick.com and LOTS of SpongeBob videos, but she has a huge list of favorites and spends a fair bit of time online after homework is done each day. I don't mind right now, because she may think she is playing, but she is really learning SO much.

When Ciarra was a baby, we chose not to do therapies for the most part. Never had ST or OT or any of those until the summer before she went to Kindergarten. What she DID have is "Concept Development Therapy". I will be grateful to my dying day that she had it. The lady who taught it came to our home, she was a Developmental Specialist, her name was Brenda. She had created this program that used a child's favorite characters to get them excited about learning. For Ciarra, that was BARNEY the dinosaur. She would do anything for Barney. Brenda used a touch screen that went right over the monitor. Eventually, we bought one to keep at our house. What a fanntastic product! Under $200, and it was easily the best investment we ever made for her education-wise. Brenda wrote programs that would have Barney celebrate with Ciarra whenever she got something right. I remember in the early days it was colors, shapes, animals, etc. Three or so shapes would come onscreen, and the program would ask "can you find _____?" Square, YAY, you found square, and Barney would come dancing out blowing kisses or stars or his theme music would play. Ciarra's name would explode in stars onscreen, and she KNEW she got it right. She wanted to be right everytime, and she was very successful with it.

As she grew, the programs got harder and harder. By 2, she knew all of her letters. By 3, she was beginning to sight read. Cause and effect, shapes, colors, animal names and sounds, letters, words, she was learning SO much. And she was learning that the computer was a wealth of information.

Once we had our own touchscreen, she could play games like those made with Reader Rabbit and Clifford. The "Clifford Phonics"game was especially helpful, teaching word families. Then we bought Clifford Learning Activities and then one called Clifford's Musical Memory Game. Reading became a strength for Ciarra, and she went into Kindergarten very ready to read, in fact reading many sight words already. That first week of school, I was called to come in and see something. Turned out to be my 5 year old daughter reading a book from cover to cover that she and her awesome new Special Education teacher Mrs. Z had created together. It was called "I See" and it was about our family. I had given Mrs. Z a copy of the Woodbine House book "Teaching Reading to Children With Down syndrome" and she used it in the early days "like a Bible". Whatever she was using, it worked! Ciarra was awakened, excited, in love with reading. Those early days were full of hope, I was still having to convince people that kids with DS could really read, one of the myths of DS is that they usually don't. At that time, I, myself had a lot to learn yet about DS. The world around me had far more to learn. Most people with DS will learn to read, like all people, there will be a spectrum of ability.

In First Grade, Ciarra's reading took off even more. This video was shot right after first grade ended. She had just had surgery, so her speech is very nasally and not quite understandable. But her reading...I was so proud!

View this montage created at One True Media
Conversations with Ciarra


Ciarra is in 2nd grade right now, and reading at grade level. I am thrilled with her reading, and we work everyday on reading for comprehension, taking what is written in the story and understanding it. She is making so much progress! Whereas she used to read and work so hard deciphering the words themselves that she would lose the train of thought and not really understand the story, now she is reading more easily and being able to take more from the stories. Watching her progression has been amazing, inspiring, and awesome! She is a hard worker, never a quitter, and truly enjoys words and language and the flow of words. Here she is, reading her first ever chapter book! The school librarian had suggested it. I will share the story of her seeing Ciarra read it for the first time soon. Needless to say, she was touched, awed, and thrilled. She belives in Ciarra, and they both LOVE books. Here she is, reading "Starlight":

View this montage created at One True Media
Chapter Books-Age 8


Spelling has been another strong point for her this year. Currently, she is doing compound words such as Ballgame Inside Baseball Sailboat Fireman...she is doing very well with them.

Friday, May 18, 2007

"Easier to cherish than to describe"

http://www.mercatornet.com/articles/saintly_scientists_hate_the_disease_love_the_diseased/

Jerome Lejeune is being considered for Sainthood. As a mom of a child with Down syndrome, I have known about him forever. But I never knew enough, and I am humbled and deeply moved by what I have learned today.

Lejeune's scientific and spiritual fame centres on his 40-year commitment to finding a cure for Down's syndrome (for pedantic reasons now known as "Down syndrome" in North America and elsewhere). At the very beginning of his medical career in the 1950s he found himself drawn to the young, mentally handicapped children, so often segregated in institutions and denied treatment which could have relieved associated health problems. He also felt deeply for the parents who learned that they had given birth to a "Mongol" child ("Mongolian idiocy" was the cruel technical term for the condition) and who fell under suspicion of breeding racial degeneracy. In earlier decades Down's sufferers had been targets of the eugenics movement.

Fellow feeling for these innocent outcasts turned the young Parisian doctor into a research scientist, his mind and heart set on solving the mystery of their condition and relieving their suffering. He would not accept that his profession could turn its back on one whole group of people.


He lived to see the day that the medical community would turn it's back. His humanity was most evident in his words about our children.

"With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity: the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about: hatred of disease and love of the diseased."


How could we go from this to where we are now? How can we in the DS community NOT follow his lead and fight loudly and publicly for our children?

"The patients are waiting for me, I have to find the answer."


However, although he laboured to the last weeks of his life -- exploring the use of folate therapy, for example -- he died in April 1994 without achieving his mission, and feeling that he was "abandoning them".



When my daughter was born almost 9 years ago with DS, I began to see the truth of prenatal diagnosis around me. So many babies were dying. So many families were being told that this blessing was a curse. I was shushed and blacklisted for screaming this from every rooftop, DS support sites did not want this dark discussion brought to light. It was not a good conversation piece, it would scare new parents. I learned to be quiet or risk banning everywhere I went. It is with some pride that I WAS banned by several sites who not only gave newly pregnant moms advice on how and when to abort, but almost pushed them over the edge with one-sided advice on the value of our children's lives. If anyone doubts that the culture of death is alive and well, I would implore you to do a search on "prenatal testing bulletin board termination for medical reasons". It is astonishing how far we have come. In a way, I am almost glad the good Doctor didn't live to see this day. In the 90's the abortion rate was near 90%. What do you suppose it is today?

My child is almost 9 now. There are fewer and fewer of her peers in the world with DS. Someday, we will come to the awful realization that we did not speak up soon enough. It is comforting to know that Dr. LeJeune started speaking up LONG before I did. It is affirming to know that my own little voice mirrors his. It is sad to know that his voice is still now, when we need it more than ever.

In our race to find the perfect child, we are throwing away the 2nd best gift God ever gave us. Having a child with DS teaches you about what really matters in the world. I am sad for the world, that they will never know until it is too late, what they have so easily discarded. In my mind, I can see the hundreds of thousands of broken little bodies as they cross through Heaven's Gate, running into his outstretched arms, accepted and loved for who they are. Finally.





"Easier to cherish than to describe"

Jerome Lejeune is being considered for Sainthood. As a mom of a child with Down syndrome, I have known about him forever. But I never knew enough, and I am humbled and deeply moved by what I have learned today.

Lejeune's scientific and spiritual fame centres on his 40-year commitment to finding a cure for Down's syndrome (for pedantic reasons now known as "Down syndrome" in North America and elsewhere). At the very beginning of his medical career in the 1950s he found himself drawn to the young, mentally handicapped children, so often segregated in institutions and denied treatment which could have relieved associated health problems. He also felt deeply for the parents who learned that they had given birth to a "Mongol" child ("Mongolian idiocy" was the cruel technical term for the condition) and who fell under suspicion of breeding racial degeneracy. In earlier decades Down's sufferers had been targets of the eugenics movement.

Fellow feeling for these innocent outcasts turned the young Parisian doctor into a research scientist, his mind and heart set on solving the mystery of their condition and relieving their suffering. He would not accept that his profession could turn its back on one whole group of people.


He lived to see the day that the medical community would turn it's back. His humanity was most evident in his words about our children.

"With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity: the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about: hatred of disease and love of the diseased."


How could we go from this to where we are now? How can we in the DS community NOT follow his lead and fight loudly and publicly for our children?

"The patients are waiting for me, I have to find the answer."


However, although he laboured to the last weeks of his life -- exploring the use of folate therapy, for example -- he died in April 1994 without achieving his mission, and feeling that he was "abandoning them".



When my daughter was born almost 9 years ago with DS, I began to see the truth of prenatal diagnosis around me. So many babies were dying. So many families were being told that this blessing was a curse. I was shushed and blacklisted for screaming this from every rooftop, DS support sites did not want this dark discussion brought to light. It was not a good conversation piece, it would scare new parents. I learned to be quiet or risk banning everywhere I went. It is with some pride that I WAS banned by several sites who not only gave newly pregnant moms advice on how and when to abort, but almost pushed them over the edge with one-sided advice on the value of our children's lives. If anyone doubts that the culture of death is alive and well, I would implore you to do a search on "prenatal testing bulletin board termination for medical reasons". It is astonishing how far we have come. In a way, I am almost glad the good Doctor didn't live to see this day. In the 90's the abortion rate was near 90%. What do you suppose it is today?

My child is almost 9 now. There are fewer and fewer of her peers in the world with DS. Someday, we will come to the awful realization that we did not speak up soon enough. It is comforting to know that Dr. LeJeune started speaking up LONG before I did. It is affirming to know that my own little voice mirrors his. It is sad to know that his voice is still now, when we need it more than ever.

In our race to find the perfect child, we are throwing away the 2nd best gift God ever gave us. Having a child with DS teaches you about what really matters in the world. I am sad for the world, that they will never know until it is too late, what they have so easily discarded. In my mind, I can see the hundreds of thousands of broken little bodies as they cross through Heaven's Gate, running into his outstretched arms, accepted and loved for who they are. Finally.

Sunday, May 06, 2007

Experiments in Inclusion. Baseball 2007.

age 6 T-Ball

One of the most intriguing aspects of parenting a child with a significant disability is the decisions you must make, over and over again, year after year. You gauge all of the information at hand, look at motivations (is this for you or for your child?) and make a plan that will allow your child to have or be or do whatever it is that they and you would like for them to have or be or do. For my child, who has Down syndrome, that decision is primarily made twice a year in relation to schooling, and 4-5 times a year in relation to sports.

Ciarra LOVES sports. Just like her big brother, she is a competitor. She loves the games, she loves the crowds, the dirt, the contact, the noise. But mostly, she loves to compete. She wants to win, and she wants to be a part of the winning, and not just be a spectator.

In many ways, the frustrations of striving for true inclusion in her schooling can be depressing and disheartening. Currently, we are battling the school (perhaps all the way to court, it seems) to include her more. She does not like to go to Special Ed when it means missing out on fun and exciting classroom time. And she knows the difference. We are asking the school to bring in an Inclusion Specialist to help find the ways that she can be included more, to make scheduling work better for her. But it is an emotionally charged and frustrating time, when PET time rolls around each Spring and decisions and placements are made for the next year.



It's a good thing that Baseball season comes on the heels of the PETs, because for now it is the saving grace in her world. In baseball, Ciarra is standing on an even playing field with her typical peers. She is not the strongest, nor the weakest. She is not the fastest...ok, she is the slowest. And sometimes she needs reminders as to where the play is, which base to throw to. But her heart is in the game, and she lives and breathes it for every single second of the season. Still, the decision to let her play or not is a hard one. Lots of things to consider. We help make the decision easier by finding a coach who is willing to work with us. This year, her coach and his assistants are wonderful. They remind her, encourage her, and prompt her when necessary. But mostly, they treat her with respect, they honor what she can do, and they do not assume that she can't. In her head coach's words from Friday night: "Teach them to respect you, Ciarra." She did, and she does.

I only wish that she didn't have to reteach this every season, in every sport she plays. It seems every season is a test, can Ciarra do it? Can she keep up? Is this the best choice? These are very real questions, and they require honest answers. Answers not skewed with Mom's opinion, but objective and realistic judgements on her ability to play the game, do it safely, and do it in a way that does not detract from the experiences of the other children on her team.



It means knowing that a certain fraction of parents will wonder what the heck we are doing out there, and it means facing some prejudices head on. It means asking the good folks who run the local rec program what they think; inevitably their answer is, "If she wants to play, let her play." They do seem to understand the intensity of my questions. I think sometimes I ask so many because I want to give them an opportunity to say no if they really think it won't work. To their great credit, they never have. Instead, they take notes about concerns, and they try to help me make the decisions about placement, coaches, and safety. They discuss honestly with me each year, each sport, each season...what can we do to allow her to play the games she loves so much?

This year, it meant allowing an 8 year old to move up to regular baseball, from T-Ball. 3 years of T-Ball have taught her the basics, and given her a thirst for real pitches and meaningful scores. The team she is on is made up of 6-7-8 year olds from 1st and 2nd grade. Ciarra is a 2nd grader, size wise and ability wise, she fits in fairly well. It was interesting to note that she has more of an attention span than some on her team, mostly boys, and somewhat younger than she. But she is decidedly a member of the team. She takes great pride in putting on her white baseball pants and her new cleats. Pink glove, hat, even tiny batting gloves. She certainly looks the part. One concession we made was purchasing a smaller (pink, of course!) batting helmet, the rec ones are huge on her and she really needs to see where she is running to.



Of course, there are plenty of very capable kids on her team, and on other teams. They can really throw the ball, for instance, much farther and harder than she can. Some of them hit farther than she does, too. But hitting the ball is not a problem for Ciarra, either. She clocks it, actually. I think it was quite a surprise for the little guys crowding the plate expecting a 3 foot roll if she got lucky enough to hit it at all. It was one of those great moments of parenting a disabled child to see her look of pride, their look of surprise, and the newfound respect they showed for her when the next inning came up and they positioned themselves farther back in the outfield. As always, it is Ciarra doing the teaching in this topsy turvy world of Down syndrome and society, she leads the way and I just follow along whispering crazily to myself "I told ya so!" So many times, she has proven herself capable to a less than open-minded crowd. Be it reading, or scoring a goal in soccer, or tying her shoes so early on, Ciarra proves often that there are at least as many things she is GOOD at as there are things she struggles with. In her world, "I can't do it" is not in the vocabulary. I am learning not to let it be in mine, either.

No doubt, she is growing older in a society whose expectations are ever more demanding. It may someday not be enough that Ciarra is really good at hitting the ball, if she cannot run fast enough she will be seen as a detriment. Just as we struggled this year with her wanting to play and all of our doubts about ability and attitudes, we will make and remake this decision over and over again in the years to come. Someday, it may be the most appropriate thing to tell her that she cannot play. Someday her safety may be at risk and the decision will be easier. I have allowed myself to consider what it will be like when that day comes, but I am jerked back to reality by Ciarra herself, tugging on my sleeve, holding up her little pink glove, and imploring me to go outside and "Practice baseball!"



If I would have known, when she was born, how much of a fighter she would be, it would have eased so many of my worries and concerns. I needn't have worried. She is far more capable and has far more heart than I could have ever imagined. The goodness of most of the people around her makes it possible, for now; coaches who see her as just another kid, parents who see her as an individual and not a token representative for Down syndrome, and a society that is slowly but surely knocking down the doors of exclusion. For now, the world is right, and Ciarra has the opportunity to make her own mark on her world, in something she loves, and be judged on her ability, and not her disability. Good luck, baby girl.

Experiments in Inclusion. Baseball 2007.

age 6 T-Ball

One of the most intriguing aspects of parenting a child with a significant disability is the decisions you must make, over and over again, year after year. You gauge all of the information at hand, look at motivations (is this for you or for your child?) and make a plan that will allow your child to have or be or do whatever it is that they and you would like for them to have or be or do. For my child, who has Down syndrome, that decision is primarily made twice a year in relation to schooling, and 4-5 times a year in relation to sports.

Ciarra LOVES sports. Just like her big brother, she is a competitor. She loves the games, she loves the crowds, the dirt, the contact, the noise. But mostly, she loves to compete. She wants to win, and she wants to be a part of the winning, and not just be a spectator.

In many ways, the frustrations of striving for true inclusion in her schooling can be depressing and disheartening. Currently, we are battling the school (perhaps all the way to court, it seems) to include her more. She does not like to go to Special Ed when it means missing out on fun and exciting classroom time. And she knows the difference. We are asking the school to bring in an Inclusion Specialist to help find the ways that she can be included more, to make scheduling work better for her. But it is an emotionally charged and frustrating time, when PET time rolls around each Spring and decisions and placements are made for the next year.



It's a good thing that Baseball season comes on the heels of the PETs, because for now it is the saving grace in her world. In baseball, Ciarra is standing on an even playing field with her typical peers. She is not the strongest, nor the weakest. She is not the fastest...ok, she is the slowest. And sometimes she needs reminders as to where the play is, which base to throw to. But her heart is in the game, and she lives and breathes it for every single second of the season. Still, the decision to let her play or not is a hard one. Lots of things to consider. We help make the decision easier by finding a coach who is willing to work with us. This year, her coach and his assistants are wonderful. They remind her, encourage her, and prompt her when necessary. But mostly, they treat her with respect, they honor what she can do, and they do not assume that she can't. In her head coach's words from Friday night: "Teach them to respect you, Ciarra." She did, and she does.

I only wish that she didn't have to reteach this every season, in every sport she plays. It seems every season is a test, can Ciarra do it? Can she keep up? Is this the best choice? These are very real questions, and they require honest answers. Answers not skewed with Mom's opinion, but objective and realistic judgements on her ability to play the game, do it safely, and do it in a way that does not detract from the experiences of the other children on her team.



It means knowing that a certain fraction of parents will wonder what the heck we are doing out there, and it means facing some prejudices head on. It means asking the good folks who run the local rec program what they think; inevitably their answer is, "If she wants to play, let her play." They do seem to understand the intensity of my questions. I think sometimes I ask so many because I want to give them an opportunity to say no if they really think it won't work. To their great credit, they never have. Instead, they take notes about concerns, and they try to help me make the decisions about placement, coaches, and safety. They discuss honestly with me each year, each sport, each season...what can we do to allow her to play the games she loves so much?

This year, it meant allowing an 8 year old to move up to regular baseball, from T-Ball. 3 years of T-Ball have taught her the basics, and given her a thirst for real pitches and meaningful scores. The team she is on is made up of 6-7-8 year olds from 1st and 2nd grade. Ciarra is a 2nd grader, size wise and ability wise, she fits in fairly well. It was interesting to note that she has more of an attention span than some on her team, mostly boys, and somewhat younger than she. But she is decidedly a member of the team. She takes great pride in putting on her white baseball pants and her new cleats. Pink glove, hat, even tiny batting gloves. She certainly looks the part. One concession we made was purchasing a smaller (pink, of course!) batting helmet, the rec ones are huge on her and she really needs to see where she is running to.



Of course, there are plenty of very capable kids on her team, and on other teams. They can really throw the ball, for instance, much farther and harder than she can. Some of them hit farther than she does, too. But hitting the ball is not a problem for Ciarra, either. She clocks it, actually. I think it was quite a surprise for the little guys crowding the plate expecting a 3 foot roll if she got lucky enough to hit it at all. It was one of those great moments of parenting a disabled child to see her look of pride, their look of surprise, and the newfound respect they showed for her when the next inning came up and they positioned themselves farther back in the outfield. As always, it is Ciarra doing the teaching in this topsy turvy world of Down syndrome and society, she leads the way and I just follow along whispering crazily to myself "I told ya so!" So many times, she has proven herself capable to a less than open-minded crowd. Be it reading, or scoring a goal in soccer, or tying her shoes so early on, Ciarra proves often that there are at least as many things she is GOOD at as there are things she struggles with. In her world, "I can't do it" is not in the vocabulary. I am learning not to let it be in mine, either.

No doubt, she is growing older in a society whose expectations are ever more demanding. It may someday not be enough that Ciarra is really good at hitting the ball, if she cannot run fast enough she will be seen as a detriment. Just as we struggled this year with her wanting to play and all of our doubts about ability and attitudes, we will make and remake this decision over and over again in the years to come. Someday, it may be the most appropriate thing to tell her that she cannot play. Someday her safety may be at risk and the decision will be easier. I have allowed myself to consider what it will be like when that day comes, but I am jerked back to reality by Ciarra herself, tugging on my sleeve, holding up her little pink glove, and imploring me to go outside and "Practice baseball!"



If I would have known, when she was born, how much of a fighter she would be, it would have eased so many of my worries and concerns. I needn't have worried. She is far more capable and has far more heart than I could have ever imagined. The goodness of most of the people around her makes it possible, for now; coaches who see her as just another kid, parents who see her as an individual and not a token representative for Down syndrome, and a society that is slowly but surely knocking down the doors of exclusion. For now, the world is right, and Ciarra has the opportunity to make her own mark on her world, in something she loves, and be judged on her ability, and not her disability. Good luck, baby girl.