Preparing your Child’s School for His or Her Special Needs

Although the school year has already begun, it’s never too late (or early) to think about what your child’s school needs to know regarding his or her special CHD situation. And any time is a good time to consider what information you should provide to your child’s school so they can better care for and support your child.

For starters, it’s always a good first step to schedule a face-to-face meeting with important school faculty members (nurse, principal, counselor, classroom teacher, etc.). This will help all individuals be able to put a face with a name and to get to know your personalities, expectations, and concerns in a personal yet professional setting. Printing off some general information/facts about your child’s specific CHD to take to this meeting is always advised. Copies should be given to at least the nurse and classroom teacher. If your child’s condition is severe enough that it will require a special needs counselor, then of course the counselor will benefit from the information sheet as well. During your discussion you should inform all pertinent faculty members of several issues. One issue being your child’s possible learning/developmental problems. Since some children with CHDs can develop learning delays or problems, let the teacher know you’d like to be made aware of any signs of concerns the teacher may have during the school year. That way you can address the concern with your child’s doctor and get his or her recommendations. Another issue to discuss deals with your child’s general health; since children with CHDs can be at a higher risk of contracting certain infections, ask the teacher to notify you if other children are sick. Also regarding general health, the teacher (especially the physical education teacher) should be made aware that your child may require more rest or may be prone to tiring more easily. There’s also the important issue of the medical care that your child may need throughout the day (medications, procedures, etc.); in these cases, the nurse and teacher should obviously be well informed about the specifics – your child’s doctor would undoubtedly supply you with information/handouts explaining your child’s medical needs that could be given to the nurse. An important (if not the most important) issue that most parents want to impress upon their child’s school is that their child is a regular kid…they should be treated as such. It’s important to let your child’s school know your desire to have your child feel “normal” and included like every other child.

Overall, it’s important to remember that while some children’s CHDs are relatively simple and may not require any special care at school, other children may need regular intervention and attention from school faculty members. So, it’s imperative that parents evaluate (especially with their child’s doctor) what exactly the school needs to know.

Choosing a Pediatric Cardiologist

It’s one of the most (if not THE most) important decisions you will make for your child once he or she is diagnosed with a CHD…choosing a pediatric cardiologist. When a diagnosis is made, parents go through so many emotional challenges that this overwhelming task can seem daunting or even impossible. But giving serious thought to who will give your child medical care is so important, and so many parents struggle with exactly what to look for when making their pediatric cardiologist selection for their child. After researching the medical community opinions and receiving parental input, we’ve compiled a list of some of the most important factors to consider when making that choice.

1. Referrals: At first, many parents are referred to a pediatric cardiologist by their child’s pediatrician (or a hospital pediatrician if the CHD is discovered at birth). But don’t feel you have to use the particular doctor who is referred to you. It’s your prerogative and right to be able to search and find the cardiologist that suits your family’s needs.

2. Insurance coverage: Although we hate to have to factor this into our decision-making process, unfortunately for many families, treating CHDs can be a long and costly journey, so knowing that your insurance will be accepted by the doctor/hospital you choose is definitely something to consider.

3. Location: In some cases, families claim they are willing to travel anywhere to seek medical treatment for their child. However, if it’s simply not a possibility for you (ex: work responsibilities, costly travel expenses, frequency of your child’s doctor visits, etc.), then definitely consider the proximity of the doctor’s office/hospital to your home.

4. Basic credentials: This is obviously one of the most important factors. What kind of education and training did the doctor receive? Is the doctor board certified in pediatric cardiology? What types of procedures do they have experience with?

5. Experience with specific CHD: For many, it’s simply not enough to know that a potential doctor has treated patients with CHDs. They want to be assured that the potential doctor has treated patients with their child’s specific type of CHD.

6. Doctor – Family Relationship: After having a consultation with this doctor, does he/she seem to be willing to work with your family and not just the patient (in other words, are they interested in educating and keeping you all informed or are they merely interested in treating the CHD)? Also, do you get along with this doctor (this may seem insignificant, but for many parents finding doctors whose personalities are compatible with their own makes their treatment journey that much easier)? Having said that, this may be one area that most parents would sacrifice if the doctor is exceptionally talented in their medical field of practice.

Even though this can be quite a stressful time, knowing what to look for when it comes to choosing your child’s medical caregiver can provide some much needed peace of mind.