I'll begin by saying that I could give you a million stories of how I have had to fight to get what is best for my special needs son, but I will refrain from keeping you here until you are 90 and share two of the most important things I have learned. The best piece of advice I was given by a friend of mine, also a special needs mom—a total superhero in disguise, in my opinion—was to remember, “squeaky wheels always get noticed.” This was so vital in learning one of the most important, if not the, most important thing, I have learned advocating for my special needs child: learning how to navigate around the, “no’s” and the, “cannot’s.” Early on, I learned, you get a lot of push back from specialist offices, insurance, and therapy clinics. It is not always an accommodating atmosphere. More times than not, I hear, “We can’t get him in until” ...a ridiculously outlandish amount of time in the future. I do not know this as fact, but in my experience, with a little push back, there’s wiggle room in all doctor’s schedules they do not offer at the beginning of a conversation, especially if you are a brand-new patient being seen. I have spoken with countless amounts of moms, who just assume the first answer is the only answer. Never settle for the first answer, if it is not what is best for your child’s needs.
Hear my heart, I am not saying that you need to do this with a nasty demeanor, but rather learn to become, what I like to call, pleasantly persistent. If one avenue does not seem to work, call and speak to another person. I know that in this special needs realm, everyone is of somewhat urgent status to be seen, but there is a difference between an appropriate time frame and an absolute absurd and unacceptable amount of time. If the door doesn’t open, try all the windows. Ask to be put on, "call if someone cancels, list" and keep calling!
I could write an entire book on the amount of insane lessons I have learned while pushing to get medications, even ones, that are absolutely required for my son to stay alive, covered by our insurance. Nope, not all medication that is prescribed is just automatically covered without further paperwork and authorizations. Understanding insurance is like learning a foreign language. The same saint of a friend who has walked me through the tricks and trades of advocating, also shared that keeping your child’s private insurance as their primary, makes a world of difference. Why you might ask? So, the state doesn't get to decide. So, they cannot tell you, that same medicine that is medically necessary, that you push to get covered, is not covered, not on their list of medications, not able to be covered without literally guinea pigging your child and therefore, an alternative medicine has to be given. If at all possible, choose to have the choice.
I once had a lady that worked as the medical assistant to the doctor, at a specialist office, tell me that she refused to write a pre-authorization for a medication my son NEEDED and had already been taking for a few years, because she wasn’t willing to spend the time to work with insurance for my son. This is real life, folks. Once I picked my jaw up off the floor, I called every line I could, to get the voicemail of the higher ups—the bosses, boss if you will. As easy as it would have been, I didn’t yell. I didn’t grow angry. I just kept pushing through until someone up there cared to listen and do something about it. Here’s the thing, there will always be someone who sees and values your commitment to advocate for your child and their needs, but not everyone will. That does not give you permission to quit, give up, or accept the first answer given. Some days are much harder than others and some appointments or medications are harder to nail down, but do not give up. Fight for what your child deserves and if their needs are not being met, find someone who will meet them.
My hope in sharing this with you, is that you will learn to listen to that feeling weighing on you, when you feel like there might be more you can do or that there may be a different answer. It is not always our default to question or push back. Do not always accept the first answer given and remember this my friends, no one…did you hear me? NO ONE, will fight harder for your child than you. Keep fighting, the fight, even when it feels like you can’t. Do not grow weary. If it gets too hard to stand, kneel. Then, get back up and keep fighting. Your kiddo needs you! You can do this!
