Disorders of the Corpus Callosum
For Parents of School-Aged Children
The school-age years bring new challenges and opportunities for children with a disorder of the corpus callosum (DCC). From social development to academic support, understanding how DCC affects learning and behavior is key to helping your child thrive in educational environments.
Education
Educational Considerations
Even if your child is doing well in school now, it’s important to stay in close contact with the special education team. Many children with DCC who appear high-functioning may not show significant challenges until 4th or 5th grade, when academic and social demands increase.
Learn about the IEP process
If your child qualifies for an Individualized Education Program (IEP) or 504 Plan, these supports can help them succeed in school. Even if they don’t need services yet, keeping in touch with a school case manager can ensure they are monitored for future needs.
Keep track of school records
Store copies of IEPs, evaluation reports, and meeting notes in chronological order. The most important documents to keep are the current year’s IEP and the three-year re-evaluations.
Consider a speech evaluation
Consider a neuropsychological evaluation
Unlike school psychological testing, a neuropsychological assessment (available through hospitals or neurology clinics) provides deeper insight into how your child processes information. This evaluation can guide learning strategies and serve as a baseline for future comparisons.
Educate teachers and classmates
Understanding the Need for an IEP
Many children with disorders of the corpus callosum (DCC) benefit from an Individualized Education Program (IEP) to support their learning and development in the school setting. DCC can impact a child’s ability to process information, organize thoughts, navigate social interactions, and manage motor coordination, all of which can affect their academic experience. While every child’s needs are unique, an IEP can provide specialized instruction, accommodations, and related services to help them succeed.
Families of children with DCC often find that an IEP is essential for addressing:
- Processing & Executive Functioning Challenges – Extra time on tasks, visual supports, and structured routines.
- Speech & Language Needs – Therapy for expressive and receptive communication, as well as social pragmatics.
- Motor & Sensory Support – Occupational and physical therapy to assist with coordination and sensory sensitivities.
- Social & Emotional Development – Explicit instruction in social skills, self-regulation strategies, and peer interactions.
If your child is struggling in school, requesting an evaluation for special education services is an important first step. Advocating for an IEP ensures that your child has the right tools and support to reach their full potential in an educational environment. Please see our IEP FAQ below for additional details.
Individualized Education Program
Information about the Individualized Education Program process.
What is an IEP?
Who creates the IEP?
The IEP Team is made up of the parent, student, school psychologist, school nurse, special education teacher, regular education teacher, school social worker, special education coordinator, occupational therapists, physical therapists, speech language pathologists, behavior specialists and building principal or administrator.
When there is concern that a child may need special education services, the school district has 60 days, after receiving the parent’s signature of approval, to complete the evaluations and meet with the parent. The evaluation process is conducted by a Multidisciplinary Evaluation Team (MET). MET members are determined based on the information received at the referral. Each specialist prepares a written report of findings to review with the team and the parent(s). Parents can request a copy of the reports up to a week prior to the meeting.
Parents meet with the MET to review their findings and if special education services are appropriate, the MET and the parents together become the IEP Team and develop the IEP. However, the parent can adjourn the MET meeting and request that it be reconvened within the next 30 days, in order to have additional time to review the findings.
Parents have an important role in helping to set the goals and objectives and they may invite to any meeting, person(s) they would like to include for any reason. Should parents not feel qualified to take on this responsibility, they can request an advocate to assist them at meetings (the school district must provide a list of agencies that supply advocates from their school district). If you do exercise this option, allow sufficient time to secure an advocate. It is highly recommended by some districts that minutes of all IEP meetings be recorded and signed as documentation. The minutes are not legally part of the IEP but can serve as a reference if needed.
One time a year the school district is required to offer to the parents/guardians a copy of Procedural Safeguards (a written account of the legal rights afforded to parents and children).
Are the guidelines the same for every state?
Individuals with Disabilities Education Improvement Act (2004) is an amendment to the original IDEA reauthorized by Congress in 2004. The Amendment defines that each state must be within the statutes and guidelines consistent with federal law. State laws must not diminish or reduce the rights of children receiving special education but may provide children with more rights and protections. The rules vary from state to state and when state law conflicts with federal law, federal law is supreme.
The Initial IEP
The initial IEP is the most challenging IEP to create because it serves as an educational guide and justifies the need for the federal funding of programs and services. Be aware that the meeting may take more than an hour because identifying the needs and services sometimes requires in depth IEP Team discussions.
For a child with a disorder of the corpus callosum, having a written report or letter that details the child’s medical condition(s) and explains how these conditions impact all academic, social, physical and emotional capabilities can be quite beneficial. The report/letter should come from a neurodevelopmental pediatrician, a child psychiatrist, or a neurologist. As a parent you should be able to report when the child achieved various developmental milestones: crawling, cruising, early sounds, first words, first sentences, etc.
The initial IEP will sometimes need to go through several revisions, particularly if progress is made very quickly. Do not hesitate to call an IEP meeting if you have concerns about your child’s progress.
The Ongoing IEP
The IEP is reviewed annually by the team and subsequent IEPs tend to build on the previous one. Present Levels of Academic Achievement and Functional Performance will be reviewed, followed by discussion of the child’s progress on Objectives and Goals. Items from the Objectives and Goals may be either closed out or renewed and new goals may be added. It is essential that Objectives and Goals in the IEP be verifiable and measurable on an annual basis. Each item must include details about what the child is expected to achieve and how that achievement will be measured. It is very important that the goals and objectives are developmentally appropriately for your child. The following sections of the IEP relate to funding of related services, supplemental supports that might be needed, state mandated formal assessments, and the accommodations that are needed for the child.
If at any time, during the year you wish to hold a conference to discuss your child’s IEP goals and objectives, you have the legal right to call a meeting.
Transition Services
The term Transition Services means a coordinated set of activities that are designed to improve a child’s academic and functional achievement in such a manner that facilitates the child’s movement from school to post school activities. Post-school options include post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation. Transition is based on the child’s individual needs, strengths and weaknesses, and preferences and interests. It may include instruction, related services, acquisition of daily living skills and a functional vocational evaluation.
Before the IEP and/or Transition Meeting
Before the IEP meeting, parents can acquire or prepare the following documents for any IEP and/or Transition conferences:
- A written summary of the parents’ view of the current educational status of the child. This is helpful so that you remember what you want the team to know about your child.
- You should be able to rely on the IEP Team to provide test scores and evaluations that were performed by school personnel.
- Bring any outside reports and test scores from any evaluations that have been recently obtained.
- It is a good idea to compose a list of the educational and ancillary services you believe your child will need to make ‘appropriate’ progress in general education and as they transition out of high school. The Team will come prepared with their recommendations for your child. Keep in mind that the key to a smooth transition for your student is rooted in collaboration between parent and school.
The IEP process sometimes includes informal discussions between the parents, teachers, and members of the IEP Team and it is a good idea to have a notebook to write down ideas that are put forward in these discussions. Keep copies of all documents in a safe place. Do not hesitate to ask the case manager if you have misplaced documents because school districts maintain a database where items can be retrieved should you need them.
During the IEP Meeting
Come prepared to make decisions at the IEP meeting but do not feel pushed into any decision that you are not ready to make. It is appropriate to ask for a meeting be adjourned, if you need additional time or information. Individual teachers and specialists will present their view of your child’s capability and recommendations for future programs. If your child is placed in a setting that you disagree with, request existing data to be reviewed to consider the “least restrictive environment.” Sometimes the least restrictive environment changes as a child develops and matures because needs change. It is appropriate to request that minutes be taken during the meeting so that you have a written account of the meeting and/or audiotape the meeting for your records.
Concluding the IEP Meeting
At the end of the meeting, be sure you have a list of action Items for all parties. These items are formally recorded on the page called, Prior Written Notice. These items are directed based on verbal agreements made during the meeting. You will be asked to sign an attendance sheet confirming that you participated in developing the IEP. You can sign that you participated; however, it is advisable to request and review the draft IEP before signing the working (finalized) IEP signature page. If you do not sign within 5 or 10 days (check the law for your state) the IEP can be implemented without your signature. You have the right to refuse to sign or to sign that you are in disagreement with the IEP. Any changes that you would like to see made might require additional IEP meetings before the IEP is finalized.
About My Child with DCC
Below are examples of what some of our DCC families have created. If you have one that we can add please email it to us at [email protected].
Please feel free to download these samples or create your own by downloading the the Microsoft Word documents below!
Medical Considerations
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Doctor’s names, addresses, and phone numbers
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Appointment dates and findings
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Surgeries, medications, and treatment plans
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Notes on medication changes, dosages, and side effects
You can organize this information in a binder, store digital copies on a flash drive, or use a medical record-keeping app—whatever works best for you.
Similarly, it’s helpful to track developmental milestones in a journal or timeline. Doctors, therapists, and educators will frequently ask about your child’s progress in speech, motor skills, and social interactions. Having this information readily available will make it easier to provide accurate details and get the right support.
Supporting Social Skills & Independence
Children with DCC often need explicit guidance in social interactions. Unlike their peers, they may not naturally pick up on unspoken social rules and cues. Instead of assuming they’ll “just figure it out,” it’s important to teach and practice social expectations in a clear and supportive way.
Talk openly about social behaviors, such as personal space, hygiene, starting and ending conversations, and understanding emotions.
Role-play different situations to help them practice interactions.
Give clear, gentle feedback –
By providing structured guidance and support, you’ll be giving your child valuable tools to navigate friendships, school, and everyday life with confidence.
We're Here to Help
Navigating a disorder of the corpus callosum (DCC) can feel overwhelming, but you are not alone. Whether you’re seeking information, support, or connections within the community, we’re here to guide you every step of the way.
Our team provides resources, educational materials, and opportunities to connect with others who understand the journey. If you have questions or need assistance, we’re just a message away.
Have a question or need support? Click below to reach out, and we’ll be happy to help!