Being a Medical Advocate for Your Special Needs Child

When you become a parent to a child with special needs there is a whole new language to learn, a whole new set of ways things are done, and frankly, it can be quite intimidating. I never planned on earning a Ph.D. just to parent my children, but often that is almost what we feel we have to do when we are advocating for our little ones with special needs. The unfortunate part is that many moms out there who don’t feel confident enough to assert themselves when they feel it is necessary. Being a Medical Advocate for your special needs child may not come naturally, but here are some tips that will help.

Let me start this by saying, you are your child’s BEST advocate. There is no one in this world who cares more about your child than you do and wants the best for them like you do. Unfortunately, in medicine, there is a bit of a “one size fits all” approach to our health care system and often the individual is lost in the standard procedures.

Our children are not standard in the sense that they should be treated in the same manner as every other child just because a protocol says so. For example, if a protocol exists that says all children born with Down Syndrome must go into the NICU for assessment, this is a blanket protocol that is part of the one-size-fits-all approach. Sure, many children born with DS may require some time in the NICU but it shouldn’t be for EVERY child. Some don’t require that at all but are whisked away because after all, that is the protocol. Do you see where I am coming from here?

With that being said, I have learned after diving head first into the world of Down Syndrome, that early intervention is not all equal. Also, around the world there are very different schools of thought regarding what tests should be run and when. This is where you as the parent come in. You have to educate yourself and become not only an advocate in the public eye, but also an advocate for the health needs of your child.

Know the Recommendations

We do know that children born with that magical extra chromosome can be more prone to a variety of health issues such as congenital heart defects, thyroid problems, and hearing and vision difficulties. It would go without saying that these things need to be checked into, so familiarize yourself with when these specialists should be consulted and then evaluate how you want to proceed. If you have a pediatrician or family doctor who is not well-versed in Down Syndrome, you may be the one needing to educate them, hopefully that is not the case.

Here is the latest AAP guidelines for what you should be checking for and discussing at each Dr. visit.

Watch out for Assumptions

Assumptions can be dangerous. When you assume that your child is not going to do things that typical children do, you may be setting your child up for failure. If you assume that your child is always going to be sickly, you may create a self-ffulfillingprophecy.

Ask for Clarification

There is no harm in asking for a medical professional to clarify why they are making a certain plan, why a specific test is necessary, why they feel that something is or is not important, etc. If you do not understand, just ask. If you are meeting with a cardiologist, ask for them to show you a diagram if you do not understand, it is their job to do some explaining so you can understand how to best care for your child.

Research

No one is more of a researcher than a worried mama bear. Research your concerns and bring them up to medical professionals. If something seems off, don’t put it to rest until you feel at peace about it. Remember, a medical professional sees your child for 20 minutes, you see your child 24 hours a day.

You are the expert on your child.

Finally, if you don’t feel that your doctor is well versed enough, and they are not willing to learn, find another. If you aren’t comfortable with something, ask for a second opinion. Not every pediatrician is a good fit for every family, the doctor is working for you because ultimately it is your insurance or care plan that is paying the bill, find a doctor you love and trust and use them to help you help your child to reach ultimate health.