The Heart-Brain-Body Connection: A Guide for Effective Parent-Led School Advocacy
Dr. Cheryl L. Brosig, PhD
Professor of Pediatrics and the Chief of Pediatric Psychology and Developmental Medicine at the Medical College of Wisconsin.
Kyle Landry
Educational Achievement Partnership Program Manager at Children’s Wisconsin
When I last posted several weeks ago I alluded to the 5 essential steps the Herma Heart Institute’s Educational Achievement Partnership Program uses to advocate for cardiac patients within the school setting. As a parent it’s likely you speak with your child’s school team on a daily basis. While check-ins and other informal conversations are generally positive and productive, I often hear parents say they just can’t get the message across of how their child’s learning challenges may be related to their medical condition(s). This is where the logic chain comes into play!
The Heart-Brain-Body Connection
When educating school staff on how pediatric heart disease (as well as other physical and mental health conditions) affect your child’s learning and development, it is important to create a logic chain which links the child’s medical condition(s), to how it affects their physical health, to how it physically impacts brain development, to how it impacts all aspects of neurodevelopment, and finally to how it results in educational challenges observed within the classroom setting. Don’t let that overwhelm you…I’m here to walk you through step-by-step.
Here is when I bust out the logic chain:
When requesting an IEP/504 Plan evaluation for the first time (initial evaluation)
When requesting revisions be made to a current IEP/504 Plan (review/revise request)
During annual health planning or update meetings with school staff (whether they have an IEP/504 Plan or not)
When educating new teaching or support staff about the child’s medical history (whether they have an IEP/504 Plan or not)
I always make sure I write my logic chain up as a formal letter and save it to a PDF so it cannot be edited. I then email a copy of my letter to all staff working directly with the child on one email thread, and then hand deliver the second copy to a special education teacher, school psychologist, school social worker, or other key staff member my child works with (regular education teacher is appropriate for a child who has never had an IEP/504 Plan before) “for their records.” For some reason receiving it twice shows you mean business, but in a totally approachable way.
When prepared in advance of an IEP/504 Plan meeting (regardless of an initial or revision meeting) I specifically ask for 10 minutes at the beginning of the meeting to share the letter with the team and answer any questions about how the child’s medical condition directly relates to challenges they may be seeing in the classroom. This step is very important because it sets the foundation for what the rest of the team should be considering when determining qualification or modifications. It’s easy to skim the letter or fail to read it all together, but when a parent comes to a meeting with prepared talking points, everyone listens.
Ok, let’s tackle drafting this letter together!
To start your letter always begin with some sort of brief intro paragraph. I recommend stating your child’s name, acknowledging their complex medical history, identifying concerns in the schools setting, and requesting formal support ensuring that they have access to all of the support services necessary to equitably participate (and thrive!) in an academic setting. Here’s an example you could customize:
I am writing today on behalf of my child/son/daughter, [name]. [Name] was born with a complex congenital heart defect requiring multiple corrective surgeries during his/her first few weeks of life. While [name] is [stable/doing well/etc.] from a cardiac perspective, he/she is at risk for associated neurodevelopmental deficits and differences. Considering [name’s] recent/on-going classroom challenges in [reading/writing/math/executive functioning/attention/behavior/social-emotional/etc.] I would like to request [a formal IEP/504 Plan evaluation/re-evaluation/review and revise meeting/etc.] to ensure he/she has access to all of the support services necessary to equitably thrive in an academic setting.
Let’s dive in…
Step 1: Clearly Name and Describe the Medical Conditions(s)
Clearly state your child’s diagnosis/ses and describe what that means in brief layman’s terms. If they have several different diagnoses it’s ok to list them all in bulleted form.
Here are some examples:
Artial Septal Defect: a hole in the muscle wall (septum) that typically separates the upper right and left chambers of the heart (atria). As a result, some oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs.
Coarctation of the Aorta: a narrowing or constricting of the aorta, the large vessel that carries the oxygen-rich blood from the heart to the brain and body. When this artery is constricted, the heart has to work much harder to force blood though the narrowing and on to the brain and body, overworking the heart over time.
Truncus Arteriosus: a rare defect of the heart in which a single common blood vessel comes out of the heart, instead of the usual two vessels (the main pulmonary artery and aorta), which causes mixed, oxygen-poor blood to be circulated throughout the brain and body.
Hypoplastic Left Heart Syndrome (HLHS): a severe congenital heart defect in which the left ventricle is critically underdeveloped at birth, significantly impairing the heart’s ability to pump blood to the brain and body.
One or two sentence is plenty - how their cardiac anatomy is physically different and how that impacts or changes blood and oxygen circulation. Google is your friend, here. I search diagnoses all the time to write my layman’s definitions. Just beware, with lots of different cardiac diagnoses and lots of different combinations of defects, you need to be sure that what you are describing actually matches your child’s unique anatomy.
Step 2: Describe the Body and Health Impact
For this section we simply need to make a statement about how the CHD (or other heart diseases or irregularities), as well as any other relevant medical conditions, can impact the body from a physical perspective. I generally have one “bread and butter” sentence that I use and customize as needed to make this point clear.
Here it is…
Congenital Heart Defects (CHD) and other pediatric heart diseases may affect blood-oxygen circulation in the body, and may cause unique baseline symptoms that may require rest and recovery such as irregular heart rate, breathing disturbances, cyanosis (blue/gray coloring of the mouth, lips, and nail beds), low energy, fatigue, and may cause strength, vitality, and alertness limitations.
If your child experiences additional symptoms as a result of their diagnoses (i.e. headaches, dizziness, stomachaches, body temperature fluctuations, etc.) add those here as well.
Step 3: Describe the Brain and Developmental Impact
Great! Next, how is the brain potentially impacted? Once again, I will share the statement that works well for the EAPP. And once again, you can choose to use it or customize it in a way that makes most sense for your child.
Pediatric heart diseases, their treatments, and related complications are known to affect normal blood and oxygen flow, potentially delaying pre- and post- natal brain development.
Step 4: List Neuropsychological Deficits
Now we take that last sentence one step further…
In fact, significant research studies have suggested that children with heart disease often score lower in hand-eye coordination, fine and gross motor skills, social-emotional functioning, and language development than their typically developing peers. Behavior, attention, immaturity, and learning challenges are also much more common among children with heart disease.
Step 5: Describe Known Educational Challenges and List Challenges Observed
When it comes to the school setting, extensive research has shown lots of common educational challenges. Here are a few common things to consider:
Educational concerns can arise at different stages of development from preschool though adulthood.
New concerns may emerge when age level expectations increase in areas of independence, organization, attention, and academic skills.
Subtle neurodevelopmental deficits affecting multiple domains are extremely common and often result in more substantial academic concerns over time.
Neuropsychological deficits do not self-correct and these children simply cannot be expected to “catch-up” on their own.
Feel free to do your own additional research too!
Here is where you braid in your specific concerns for your child. Or better yet, further bulk up this section with the results from any formal neurodevelopmental testing that has been completed.
This section might look something like this:
At this time I have concerns related to [name’s]… (list away, but be specific! Share any examples that have been clearly observed in a classroom setting).
Academic challenges like those [name] is experiencing are very common with pediatric heart patients. These concerns often arise at different times from preschool though adulthood as independence, organization, and skill level demands increase. Subtle neurodevelopmental deficits affecting multiple domains may result in more substantial academic concerns over time as they do not self-correct and these children cannot be expected to simply “catch-up” on their own.
[Name] received a formal neuropsychological evaluation on [date] at [age]. This assessment included interviews, observations, and completion of both formal and informal tasks, as well as pencil and paper based testing. The completed evaluation report revealed the following diagnoses and impairments… (then list as applicable just as you did with the medical conditions – diagnosis and layman’s description).
Finally, wrap up your letter by restating the purpose. Don’t forget to sign off with your signature and contact info! If I was writing the letter, my closing paragraph might look like this:
Based on a combination of the known neurodevelopmental challenges related to pediatric heart disease and the challenges observed at home, in the classroom, and in the community, this letter should serve as a formal request for [a/an IEP/504 Plan evaluation/re-evaluation/review and revise meeting/etc.] to evaluate for [new/additional] educational services and/or accommodations. Please contact me at your earliest convenience to complete any necessary paperwork and schedule follow-up.
Ok, so your letter is done but your work isn’t!
Remember to send off your letter with a request for 10 minutes at the beginning of any related follow-up meeting to share this information with the team. Review your key talking points ahead of time and practice delivering a clear and concise message: these are my child’s medical conditions, this is how their brain and body are impacted (or at least at risk), and here are my concerns that I would like discussed as a team today.
Almost done, one last step. I urge you to talk about the importance of school support as a component of follow-up care and advocate for school liaison support within your own hospitals and cardiac centers. If you don’t have the right words to start the conversation, I do. Seriously, share my contact information. While my work is housed within Children’s Wisconsin, my mission is global. Your child matters to me and I am willing to put in the time, effort, and “dirty work” to advocate for the resources and support they deserve. I am also here to celebrate your successes – if these 5 steps transformed the way you were able to advocate for your child or their access to a quality education, I want to hear about it!
Stay tuned for the very anticipated launch of our new Educational Achievement Partnership Program webpage, loaded with inspiring patient stories and our most tried and true advocacy resources, this Fall!