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The following resources are based on California State regulations for children attending publicly funded schools. If your child is attending school outside the state of California or a non-publicly funded school, some of these resources may be available. Check with your school, school district, and state programs.

This section refers to working with teachers. However, many of these resources can be used with coaches, tutors, babysitters, extracurricular activity instructors, camp directors, or anyone who will be working with your child.

If you are interested in exploring this topic further, please reach out to your child’s care manager from your Pediatric Hand Team. They are here to help!

School Requirements

In California, the only physical requirement for children to start kindergarten is to be out of diapers. Children are not required to be able to fasten their clothing (buttons, zippers, tying shoes) independently. Teachers and aides are available to assist as needed.

To help support the physical function of your child before kindergarten, practice daily activities with them. Give them the time and space to explore, try, and find ways to complete activities on their own as much as possible. Be creative in alternative strategies and modifications for activity completion.

The following is a list of activities children do in school. You can practice these with your child before school starts to help make you all feel more prepared.

Activities children do in school include:

Zipping and Unzipping

  • Lunch boxes, backpacks, jackets, pants

Opening containers

  • Lunch containers (Tupperware, reusable bags, zip lock bags, chip bags)
  • Small containers with lids storing things like Playdough
  • Large Tupperware boxes for things like crayons, markers, paper

Hand washing

  • Turning on water, obtaining soap, rubbing hands together, rinsing, drying hands with paper towels or air dryers.

Eating

  • Picking up food items from the table and bringing them to mouth

Grip

  • Holding markers, pencils, crayons, paintbrushes, and pens for writing/ drawing/ painting
  • Cutting with scissors

Carrying items

  • Toys, markers, backpacks/ lunch boxes, books, cups full of liquids

Fastening shoes

  • Tying laces, Velcro, elastic shoelaces

Opening and closing doors

  • turning door knobs, pushing down on door handles, or pushing doors with push bars

Playing on the play structures

  • Swing on monkey bars
  • Climb up and down ladders and stairs

School Services

Teachers

Teachers are trained to evaluate children to ensure students are meeting learning objectives and progressing throughout the year. They will request a specialized assessment(s) of a student who is struggling. This assessment will identify any areas where targeted interventions may help. Teachers and school administrators have been trained to complete this process as part of their professional duties. However, if you as a parent feel that your child may benefit from further evaluation and/or that your child’s needs are not being met, you have the right to request an assessment.

Assessments

If an assessment determines that your child would benefit from interventions, they may receive adaptations, modifications, and therapeutic services such as Occupational Therapy. These services are provided under two federal laws: Section 504 from the Rehabilitation Act of 1973, and the Individualized Educational Plan (IEP) from the Individuals with Disabilities Education Act. While these are federal mandates, they are locally interpreted and applied by each state and school district.

Section 504

Section 504 is from the Rehabilitation Act of 1973 is commonly referred to as “504” or “section 504”. This policy applies to the school setting to ensure that children with a documented disability and documented needs receive accommodations to access the learning environment and curriculum. Children with CHD who would benefit from services will likely receive services covered by this policy.

You, your child, your child’s teacher, and other school professionals will develop a collaborative team. This team will meet and develop a plan to implement modifications and accommodations that have been determined to support your child in school. This plan is commonly referred to as the “504 plan.” This team will agree to carry out the accommodations and modifications determined in the meeting. You will meet as a team at least annually to review the plan. Your child will be monitored for progress and determine if the supports are no longer needed or if modifications to the plan are needed. Schools are mandated to provide these services under 504, but are not federally reimbursed for accommodations or modifications made.

IEP

An individualized education plan (IEP) is mandated by the Individuals with Disabilities Education Act, which is federal legislation separate from Section 504. The IEP is designed to support children’s learning. For children to qualify for services, the child must have a documented disability that falls under a specific category that is covered by the legislation. The child’s educational needs and learning difficulties must be documented. Then, you, your child, and your child’s teacher and other educational professionals involved meet to determine a detailed individualized plan with learning goals to most effectively support your child. This plan will be reviewed annually to determine if learning goals have been met, if new ones need to be created, or if services are no longer determined. Federal funds reimburse IEP services. IEP services do not typically apply to children with CHD.

For more information on 504 and IEP review the US Department of Education Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools 504 Resource Guide

Requesting Assessments

You, as a parent, have the right to request an assessment for your child. You do this by writing a letter to the school administration requesting an assessment. If necessary (for instance, if the school administration is not responsive), you can ask your child’s doctor to request an assessment in writing. The school is legally required to assess a child when their doctor requests this. Here is a Sample Letter Requesting a Section 504 Plan for your use. Please change as necessary to fit the needs of your family.

Talking to your Child’s Teacher

Your child’s teacher is a trained educational professional and has a wealth of knowledge to maximize the learning of all of their students. However, it is unlikely that your child’s teacher has taught a child with a CHD. This experience can be scary and uncomfortable for them until they get to know your child, but this does not reflect their ability as a teacher. You and your child’s teacher can work together to prepare your child for success in the classroom.

There are a variety of children’s books that have lead characters with congenital hand differences or speak generally about differences. You can review these books on our Resources Page, and/or share this list with your child’s teacher. You can also gift or loan these books to your child’s teacher. They can use the books as a tool in collaboration with your child to begin conversations early on. This sets the tone and expectation for inclusion in the classroom.

As your child approaches kindergarten, consider setting up a meeting with your child’s teacher before school starts. Teachers are usually very welcoming and receptive to meeting with a child’s family. Your child and their teacher can meet before the excitement and rush of the first day of school, so they are both better prepared to work together.

Here is a sample conversation outline of things to share with your child’s teacher at this meeting. Tailor this conversation to meet the needs of your family and your child’s teacher. Share components in whatever way feels most natural for your family.

1 . Medical background of CHD

  • “My daughter was born with aphalangia, which means that she is missing fingers on her left hand. We do not know why this happened, and it is not a result of anything we did or did not do.” 

2. The language your family uses for CHD

  • “We like to use the words’ limb difference’ or ‘little hand’ when we talk about her hand, please use these words also.”

3. How your family introduces CHD with other children

  • “When kids start asking about her hand, we say ‘That’s part of who she is, she has brown hair, green eyes, and a small hand. Sometimes hands look like this’.” 

4. ‘Show Off’ different tasks such as building with blocks, carrying items, opening containers, putting on shoes and jackets, and writing. This familiarizes your chid’s teacher with how your child has already made adaptations and modifications. Your child’s teacher can support these in the classroom. This also increases the comfort of your teacher to expect these differences and help educate your child’s classmates as part of the classroom experience.

5. Different tasks that your child may need supports in and how to help your child best.

  • “My daughter is still working on zipping up her jacket, she may need help getting the zipper started.” 

6. Things your child likes to do

  • “My daughter loves to dance, she takes ballet lessons, and she loves horses.”

7. Your concerns, so that you can work with the teacher to develop a plan to address these

  • “I am concerned with how her peers will interact with her hand, as school-aged kids notice her difference; she was teased recently on the playground. How do you manage teasing in the classroom, and what can she do if she is teased?

8. Features of adaptive equipment /prosthetic devices if you use them.

Share with your child’s teacher the purpose, features, and management of the equipment and devices as well as instructions you have told your child to do when using devices/ caring for devices.

  • “This is called a splint, and it fits between my daughter’s thumb and her palm. It is to help widen this space. She is supposed to wear it at night, but she likes it and may bring it to school. It is hard plastic and will melt if left in the sun or on a heater. She knows she is not supposed to bring it to school because we don’t want to lose it or break it. Please take it if you see it, and we can come to pick it up later.” 

9. Any additional information that is helpful for your child’s teacher to know

10. Ask your child’s teacher if they have any questions

About Me

Another way to communicate with your child’s teacher is to draft an “About Me.” This is a summary of activities that your child likes to do, with photos of them doing these activities. A visual depiction of your child’s abilities may be helpful to your child’s teacher.

Here is a template for About Me. You are welcome to edit this template to fit your child’s needs. Work with your child to complete this; it may help both of you prepare for school and other adventures.

Often times in early elementary school grades, teachers will feature a “Student of the Week.” Each student will be highlighted for one week over the school year. You can talk to your teacher to see if this is a practice in their classroom. If so, you can ask what his/her thoughts were on featuring your child earlier in the school year instead of later. This can help your child’s teacher to help introduce your child, and their abilities set the tone of inclusion in the class. This also gets ahead of any teasing or bullying that may occur. A “Student of the Week” is a helpful format, as your child can be highlighted in a way that every child will also experience.

Personal Resume

Another way to communicate with your child’s teacher is to draft a personal resume. This resume operates similarly to the About Me, but does not include pictures. Complete this with your child, or if your child is older, he/she may complete it on his/her own. The personal resume summarizes the activities your child enjoys doing, addresses the CHD, and provides his/her teacher with resources on how to best support your child. By focusing on the activities your child can do, the teacher can better create an imagined future for your child in their class. This Personal Resume Template and Sample Personal Resume* are designed for you and your child to use feel free to edit as needed.

*Sample Personal Resume used with permission from E. Warkentin, a parent of a child with CHD.

Navigating Conversations in the Classroom

Teachers are trained to discuss topics relating to diversity and inclusion. You can help supplement their knowledge on limb difference by sharing the resources found on Social Scripts and Creating a Story section on the Child Experience Page. This helps support your child’s ability to communicate their CHD with their peers effectively. You can also share children’s books found on our Resources Page to help promote inclusive conversations on CHD.

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For questions, comments, or concerns please email ncl.chd@shrinenet.org

Page last revised on August 27, 2019

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