Advocating for Your Special Needs Child. Things to Know
Tips for Special Needs Parents on How to Work with a Doctor
As a parent our main goal is keeping our children healthy and out of harm’s way. We feed them well, give them their vitamins but unfortunately, sometimes things don’t go as planned. When you are faced with a medical crisis or diagnosis sometimes your child will require hospitalization.
After hospitalization, their diagnosis may be ongoing and require several appointments, therapy, and/or medications. The number one thing that you can do for your child is be their advocate and be their voice. Being an advocate takes organization, perseverance, and a little moxie.
You are suddenly being thrown into a world of different doctors, people you are going to meet and appointments. Keep a large file so that you can grab your records at a moment’s notice. Every time you meet a new doctor or medical staff ask for their business card. Keep a separate envelope in your file with all of the cards you start to collect. Have copies of all of your child’s records. Don’t be afraid to ask for a copy of a test the moment that it is taken. Most places will gladly put Xrays, MRIs, etc on a DVD for you at no charge. It’s MUCH easier to do this while you are already in the medical facility, rather than when you get home and you have to chase down records.
This doesn’t mean you have to be an annoying pushy, helicopter parent; but do make your voice heard. It’s a fine balance between letting the doctor do their job but also remembering that you know your child best. A little humility goes a long way. Don’t be afraid to ask a lot of questions. Put the ball back into the doctor’s court.
My favorite thing to say is “I trust your guidance and expertise in this area; is this what you would do for your own child?”
ASK why a certain test is being run.
ASK what happens if you don’t do a certain treatment.
ASK what other options there may be.
It is ok to stay informed and be educated about your child’s health. Also, ask the doctor or nurse the best way to reach them if you have a question. Some medical professionals are ok with you emailing them, which is very handy. They can then answer you at their own convenience, and it keeps a record for you to reference at any time.
GET 1000 OPINIONS!
Well not really 1000 but it is ok to not go with the first opinion that you hear. When you are dealing with something as important as your child’s health it’s ok to hear what other medical professionals have to say. This is also when your mad organization skills come into play. Doctors will be much more receptive to you when you come in with medical records. It will also save you time and money so the tests don’t have to be run again.
Having a child that has a medical condition takes a lot of work and time. Sometimes it is going to feel like a full-time job. However, if you take a little extra time in the beginning to get organized and educated, it will make everyone’s lives a little easier.