Having a child with medical or other special needs can be overwhelming and expensive. Not knowing where to find resources is a common reason children and parents don’t get the support they require. I wish I could transfer everything I’ve learned over the past few years to you. My book is a great resource, but even it doesn’t cover everything exhaustively. Trying to address every challenge all in one place would have made it so vast and unwieldy it would’ve been unreadable.
It’s sometimes difficult to understand what your primary care doctor is trying to tell you, but they’re used to explaining. Some can tell by the look on your face you don’t get it, and immediately just give you a five second rundown of what the term they just used means. Even better, many primary physicians don’t hardly use medical terminology at all.
Your child’s pediatrician is similar, but what happens when you have more than just a pediatrician? Medical terminology is a massive hurdle to overcome. If you’re working with a specialist you’ve never seen before it’s especially overwhelming. First, here’s a list of things you can do to ease the pain when talking to a new specialist, or a familiar specialist about an unfamiliar problem.
In the past year or so I’ve been around a lot of other parents whose kids have significant medical needs. I’ve learned a lot from them, and I hope I’ve done my part to share what I’ve learned with others. The value of this kind of relationship can’t be described in words. Over time you learn who is trustworthy and who isn’t. Until then, be sure to run suggestions by your child’s doctor. It’s unlikely anyone out there would intentionally try to harm your child, but there’s an overwhelming amount of misinformation circulating online.
Anyone can create a website. Literally anyone, and at no cost. There are a lot of great resources out there, but some are written by people unqualified to make the claims they’re making. Even if something is a valuable piece of information, there are frequently times where what works for one child may harm another. When people search for information on the internet, some of it inevitably comes from these feeder sites which claim to be an authority on their topic. This information is then shared by mouth as well as through reputable aggregation sites.
Support groups are one of the most helpful things I’ve found to keep my sanity. There’s nothing quite like sitting down and talking through your problems with people that deal with the same issues you do each and every day. I vaguely remember what it was like before I joined them, but mostly its a blur. I knew nothing about tube feeding when they placed my son’s nasal gastric (NG) tube in the hospital. If not for our home care nurse coming once a week I would’ve been completely and utterly lost.
A few people have told me I appear to be handling things really well and have my life together. I thought about why, and it’s because of my support network I’m able to stay calm and keep going. Without them my sanity would scatter to the wind within a matter of days.
This is more than slightly off topic, but recently a lot of women in my support groups have talked about either divorcing their spouse or their spouse asking for a divorce. The ones whose spouse request a divorce are taken completely off guard and are especially distressed. I’m going to create a page about this when I have a moment, but in the meantime I found a great resource that includes information about divorce in all 50 states. It has lawyers you could potentially contact, but does not push you into doing so. If you would prefer to do the research on your own they provide all the information you need.
I hope it helps. When I finish with the page it’ll be more comprehensive. It makes me more than a little sad to think about everyone going through this major life event having no idea where to begin.