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  • Amanda N

Navigating School with CUL3-Related Neurodevelopmental Disorder

Updated: Oct 29, 2023

As a parent or caregiver of a child with a neurodevelopmental disorder, the back-to-school season can stir up a mix of emotions – from excitement to apprehension. Whether your child is entering a classroom for the first time or returning for another year, preparing for their educational journey involves careful and thoughtful planning.

I know this firsthand as my son, who has CUL3-related neurodevelopmental disorder, is now entering Grade 4. Our school journey hasn't been easy, and we've learned many valuable lessons along the way. Not being aware of his genetic disease until he was 8 years old, we ventured through various schools and classroom setups in search of the right fit. Regrettably, many times he struggled to find his place. From a traditional preschool to a Montessori kindergarten to virtual schooling at home for first and second grades, the journey was marked by weariness and exasperation for both our child and us as parents. It’s now his second year in a specialized school for neurodivergent children, and he finally seems happy and engaged.

Based on these experiences, I am sharing some tips that other parents/caregivers may find helpful in navigating their own CUL3 child’s educational journey.

1. Understand Your Child's Needs

Every child with CUL3-related neurodevelopmental disorder is unique. To best understand their learning needs, consider having a psychoeducational assessment conducted, which can be instrumental in gaining a clearer understanding of their strengths and areas that need support.

2. Choose a School and Classroom Setting based on Those Needs

Selecting the right educational environment for your child requires careful consideration. There are various options, each catering to different needs.

  • General Education: Traditional classroom settings where students with diverse abilities learn together.

  • Inclusive Education: Inclusion classrooms allow children with special needs to learn alongside their peers, with support from special education teachers and accommodations.

  • Special Education Classroom: Tailored instruction and therapeutic support that align with your child's abilities and pace.

  • Specialized Schools: Institutions offering targeted interventions and a deep understanding of your child's unique requirements.

  • Homeschool: A flexible option that allows customization of education within the comfort of your home environment.

3. Build Open Communication

Transparent communication between parents, educators, and school staff is paramount. Initiate discussions to share your child's condition, strengths, and challenges. Mention the value of maintaining an open and supportive relationship with the school. Regularly communicate with teachers and administrators to address concerns, share updates, and collaborate on your child's educational journey.

Consider crafting a "communication passport" that concisely summarizes your child's needs, providing an accessible reference for school staff.

4. Work with Educators to Create an IEP

Collaboration among medical experts, therapists, and teachers is pivotal in designing an individualized education plan (IEP). The IEP outlines required accommodations, therapies, and support tailored to your child's learning journey. Highlight the significance of individualized accommodations and modifications outlined in your child's IEP. These adjustments, such as extended time for assignments, assistive technology, or preferential seating, can create a more inclusive and accessible learning environment.

5. Prepare a Transition Plan for your Child

Transitions matter, especially for children with developmental differences. It may be helpful to develop a transition plan encompassing routines, transportation, and after-school activities. Visual schedules and social stories can aid in helping your child anticipate daily activities.

6. Promote Independence

Empower your child to foster confidence. Practical skills like self-care routines, communication strategies, and problem-solving techniques can contribute to their autonomy. Working with the school, you can encourage age-appropriate independence during classroom activities. This can often be done with the help of a teacher's aide and/or an Occupational Therapist.

7. Collaborate with Support Staff and Specialists

Engage with support staff and specialists within the school, such as special education teachers, speech therapists, occupational therapists, and counselors. Regular communication with these professionals can help ensure that your child's specific needs are addressed effectively in the classroom.

8. Encourage Social Skills Development

Discuss the importance of fostering social skills development for your child. Share stories about the positive impact of supportive classmates and how these relationships can enhance your child's social development. Schools often offer social skills groups, peer buddy systems, or other initiatives that facilitate positive interactions and relationships with classmates.

9. Encourage Inclusivity and Discuss Bullying Prevention and Intervention

Talk about the significance of promoting an inclusive mindset among classmates, teachers, and school staff, and address the need for a safe and inclusive school environment that prevents and addresses bullying. Encourage schools to promote empathy and sensitivity among students by organizing disability awareness events, workshops, or classroom discussions. This can help contribute to a more compassionate school community. Additionally, emphasize the importance of open dialogue to ensure your child's emotional well-being.

10. Emphasize Inclusive Extracurricular Activities

Mention the benefits of participating in inclusive extracurricular activities, such as sports, arts, and clubs. These activities provide opportunities for your child to develop talents, build friendships, and enhance their overall school experience.

11. Encourage Self-Advocacy and Empowerment

Highlight the value of teaching your child self-advocacy skills. Encourage them to express their needs, preferences, and concerns as they grow, fostering a sense of independence and empowerment.

12. Monitor and Adjust

Stay connected with the school and medical experts as your child's educational journey unfolds. Be ready to adapt the IEP to changing needs. Regular check-ins ensure that progress aligns with educational plans, offering a consistent path forward.


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