How to Prepare for Starting School with CHD

As the final weeks of Summer approach, there are school supplies to buy, carpools to arrange, and new routines to begin. For families of those with CHD, there may be additional preparation to ensure their student is able to reach their full potential. In this week’s blog, educator and Heart Mom, Tamara Jazwinski, discusses the possible resources available to students impacted by CHD.

Sending your child to school is an exciting time. For parents of a child born with a congenital
heart defect, though, this transition may not feel as seamless as we would like. Heart parents,
like all parents, have many hopes and joyful expectations for their children, yet there are so
many fears associated with sending our heart kiddos off to school.

You might feel like few people understand your worries and concerns and you might ask yourself questions like:

● Will my child be safe at school, especially if they have a cardiac device?
● How will the staff know how to help my child if there is an emergency?
● Does my child have any learning challenges that stem from the after effects of surgery?
● Does my child have an increase in anxiety due to traumatic experiences?
● What can I do if I am concerned about my child’s progress in school – both academically
and socially?

Parents need to be aware of the services available in schools, when it is appropriate to ask for
them, and how to pursue them. Each state and school district has their own protocols and
procedures. Here are some general supports and plans to be aware of:

Early Intervention (EI)

(EI) exists “To help children between the ages of birth to three with disabilities or delays, to learn and grow… support families in promoting their child’s optimal development and to facilitate the child’s participation in family and community activities.” (Illinois Department of Education) Early intervention allows for support to be put in place as early as possible for children who may be (medically) compromised, leveling the playing field and helping bridge gaps that may occur early on. You can discuss this option with your child’s pediatrician, school district or local EI advocacy office.

The Healthcare Plan

The Healthcare Plan is developed in conjunction with the school nurse. It is a plan of action to
help increase awareness to school personnel about your child’s health condition, emergency
plan, and/or coordination of homebound / hospital instruction, if necessary.

A 504 Plan

A 504 Plan is a plan to ensure that a child who has an identified disability under the law and is
attending an elementary or secondary education institution receives accommodations which
allows them to reach academic success and to access their learning environment. Students with
a 504 Plan will not receive specialized education (e.g. modified curriculum), but the school must
eliminate barriers to the child’s access to full participation in school activities, including the
general education curriculum.

Individual Education Plan

An Individual Education Plan is also known as an IEP. Under the Individuals with Disabilities Education Act (IDEA), schools are required to provide all educationally disabled students ages 3-21 with a free, appropriate public education (FAPE).

● In order to be found eligible for special education services, the school’s pupil support
team must determine that the student’s disability negatively impacts their ability to
access the general education environment and curriculum

What’s the difference between a Section 504 Plan & an Individualized Education Plan

● A 504 Plan should be developed for students with disabilities who do not require
specialized instruction plans but require accommodation and support to access public
● An IEP should be developed for students with disabilities, who require specialized
● Both IEPs and 504 Plans should be reviewed and/or updated annually to ensure that the
student is receiving the most appropriate support for their specific disability/impairments

What defines a “disability” under the law?

As defined by federal law: An individual with a disability means any person who: (i) has a mental
or physical impairment that substantially limits one or more major life activity; (ii) has a record of
such an impairment; or (iii) is regarded as having such an impairment. Conditions or impairments
may include specific learning disabilities, diabetes, epilepsy, allergies, low vision, poor hearing,
heart disease or chronic illness that may not be obvious. If the condition substantially limits that
child’s ability to access their education, the student may be considered to have an “impairment”.
As a result, these students, regardless of their intelligence, will be unable to fully demonstrate their
ability or attain educational benefits equal to that of non-disabled students (The Civil Rights of
Students with Hidden Disabilities under Section 504 of the Rehabilitation Act of 1973 Pamphlet).

Never forget that your concerns are valid and your questions are necessary. Your child’s academic and social emotional well being are critical, alongside the care they receive for their CHD.

What services may be available if my child is eligible?

Each child’s needs and accommodations are determined individually. Determination of what is
appropriate for each child is based on the nature of the impairment and what that child needs in
order to have an equal opportunity to access their education when compared to their non-disabled

Bottom line, don’t ever hesitate to reach out for help and support at your child’s school. The school
nurse, social worker, psychologist, speech pathologist, and school counselor are all key players
and part of a team of advocates that are there to help provide resources so your child can
ultimately access their education fully, and achieve success.

Tamara Jazwinski, MSEd, LPC has been an educator since 1991 and has worked in both the private and public sectors in elementary and secondary settings. She has been a high school counselor in Community High School District 155 since 1998, working at Crystal Lake Central High School in the northwest suburbs of Chicago, Illinois.

Tamara’s younger son, Matthew (b. 2002) was born with Tetralogy of Fallot. He required open heart surgery at two months of age and a pacemaker at age three. She has volunteered for Lurie Children’s Hospital’s Chicagoland Cardiac Connections, The Children’s Miracle Network, the Children’s Heart Foundation, and Conquering CHD. She has spoken at numerous events about the importance of early childhood interventions, helping parents learn how to access support in the area of education.

Tamara hopes to provide perspectives from both the educational and parental points of view
when it comes to helping children born with congenital heart defects reach their full potential as
students, and people.

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