First and foremost, congratulations on your sweet child! Not everyone will remember to say that, but he or she is still a life to be celebrated, and we welcome you and your child to this world. I know how much this time is confusing, sad, disorienting, and heavy. My husband and I have three boys, and our middle son, Dean, has Prader-Willi syndrome. I remember the early days like they were yesterday, and I want to help you through this first period of what must feel to you like unchartered waters.
I’ll get to the heart matters in another column, but here, I want to address the myriad practical matters that you will face before you can even truly wrap your head around anything else:
- Think twice before Googling. It truly might not be your best resource, even though it feels like an easy way to obtain information. You really don’t need bad information right now, you need solid, accurate and encouraging guidance. That said, you might find that there’s a national association or other organization for the diagnosis you’re facing, and this might be an appropriate place to start.
- Next, get a binder. It doesn’t have to be Pinterest-worthy, just something with pockets or dividers that will help you organize documents about medications (when you start and stop, dosage, etc.), notes from doctor appointments, contact information for all your associated medical/insurance-related folks, official reports and therapy notes, and whatever else might be necessary. Bring this binder to your appointments. It will gain you credibility with your child’s providers (the has-it-together mama has arrived!) and it will save you endless smartphone searching and Googling. Eventually, you might be able to let that binder go and move to something more informal. But it will be a lifeline in the beginning.
- And on that note, especially in the beginning, bring someone with you to your child’s doctor/therapy visits. Your head will be fighting with your heart to pay attention to what is being said, and it’s easy to leave an appointment and completely forget what transpired. Write down your questions beforehand and refer to them (I often forget that part) during the appointment to make sure they are adequately addressed. If your child has a rare disorder in particular, you will quickly become the expert and often know more than your child’s providers. This is not their fault. Some of your biggest allies will be those not with the most knowledge (although that helps!) but with the greatest willingness to learn. Treasure these people.
- Find parents in your geographical area who have kids with special needs. They will be able to recommend doctors, therapists, resources, support, and so much else. No need to reinvent the wheel if someone else has already done so. Facebook is great for finding these people, or heck, even Instagram or Twitter. I’ve posted picture of my son with the hashtag #PraderWillisyndrome and met other families that way! #hashtagyourbrainsout
- Regarding insurance, request a nurse case manager. This is an actual registered nurse working for the insurance company who will be assigned to your child and call you to check in on a periodic basis. Educate them on your child’s diagnosis. If you have a concern about coverage or a claim, don’t waste your time with a general 1-800 number - call your nurse case manager instead. Also, I don’t have the research to back this up, but I swear to Starbucks that more claims are approved when you’re under the care of a nurse case manager.
- Realize that you cannot do everything. You know that whole “it takes a village” deal? This is it to the nth degree. Let people do your laundry. Ask your church or mom’s group to set up dinners. If you have other kids, let other people watch them (and by the way, those kids WILL BE OKAY… and so will you).
As difficult as it is to believe right now, all of this will become normal, or at least as normal as one can expect. Soon, you’ll do so much of managing your little one’s special needs without even thinking. Sometimes it will be overwhelming, and sometimes it’ll feel like a piece of cake. You’ll look back and not even know how it all got done. But it will get done.
I believe in you.
Ali is a work-at-home mom living in Richmond, VA, with her husband and 3 boys – Cole (5), Dean (3.5), and Emmett (21 months). She is an editor and writer, and volunteers for the Foundation for Prader-Willi Research.