When we traveled to China in September of 2014 to adopt our son, we took a car seat and a vest that can be used as a restraint device for car travel – the guides loved the extra 10-15 minutes we took loading up our kids. I took along so much medication that I almost got arrested in Beijing for smuggling. I nearly burned down a floor of the hotel in Chongqing trying to charge my otoscope – apparently rechargeable batteries don’t do well in an adapter. All of this to say, sometimes being a pediatrician and an adoptive mom can complicate the situation just as much as it helps.
On the other hand, I am fluent in a foreign language that can really help smooth out some of the bumps encountered in a special needs international adoption. I’m not talking about Mandarin – I tried out the little I had managed to learn on the folks at the breakfast buffet. It seems my Southern accent makes my Mandarin largely unintelligible. I am referring to the language I spent the first two years of medical school learning and the past decade-plus mastering. Medical jargon might as well be classified as its own language. I have helped several families review special needs files, and translating the medical-ease is 90% of what I contribute.
So armed with that skill set, I have compiled my anything but comprehensive “Top Ten Things Every Special Needs Adoptive Parent Should Know”.
*Disclaimer: I am not an International Adoption Specialist. I am your run-of-the-mill, general, outpatient pediatrician. Basically, I’m the guy or gal with the freezing hands who shoved Q-tips down your throat when you were little.
1. Ask for help when reviewing files. Some pediatricians charge for this. Some do it for free. Most International Adoption Clinics provide this service, but your pediatrician might feel comfortable also. If at all possible, add 2-3 chart reviews to your adoption budget. No matter how well you budget, you’ll be hemorrhaging money in country, so a little more up front is well worth the piece of mind that you have every pearl out of your file before traveling.
2. Schedule a “prenatal” visit with the pediatrician you plan to use or already use for your older children. These visits traditionally involve a pregnant, first-time mom with a 3-page list of questions, but adoptive parents can take advantage of that same type of visit. This may give you the opportunity to ask medical questions about your child’s file and find out how comfortable your pediatrician may be caring for a special needs child with limited knowledge of past medical history.
3. Find the closest International Adoption Clinic. There are over 30 IACs in the US. If there is one close to you, this can be a very valuable resource that can be easily accessed. If the closest one is still a significant distance from your home, you may want to be more particular in searching out a general pediatrician who will be comfortable and confident managing your child. You may need to set up visits with a few before you find the one who fits.
4. Network with other adoptive parents. This is so important. It can be especially meaningful if you can find parents who have adopted a child with the same or a similar special need. Even with my medical background, a Facebook group of parents with kids with the same need has been one of the most valuable sources of information for accessing care. Now, don’t get me wrong, I dread the “I was on Web MD and it said my child has….” as much as the next doc, but networking with parents who have been where you are and have learned a lot by experience is a completely different (and very appropriate) use of the internet.
5. Ask your agency for help finding adoption-friendly providers and parent networks in your area. We’ve done our taxes from last year. International adoption isn’t cheap. One of the reasons you pay agency fees is to have them serve as a resource to help you navigate the system, including the medical system.
6. Do your own research. This tip also enters that murky territory of internet self-diagnosis, also known as a Chief Complaint of “Dr. Oz said…”. But seriously, arming yourself with some general knowledge of what your child will need upon arriving home will help you feel more confident in navigating a complex system. A great jumping point can be found here. Just please, please, pretty pretty please, make sure you are accessing reliable resources. Professional medical associations are generally safe bets, as are academic institutions.
7. Medically prepare for travel. So maybe you don’t travel with a gallon of Bactrim, like I did, but definitely inquire about getting some common prescriptions before travel from your pediatrician or International Adoption Clinic. I like to send my families traveling internationally with an antibiotic, permethrin for scabies, ondansetron for nausea and a topical steroid cream (mainly because that’s the medication I ended up using most in country). Also make sure you have over the counter pediatric fever/pain reducers and constipation treatment.
8. Once home, consider traveling in the US for expert medical care for your child’s condition. This is another one of those realities of medicine that I wish were more ideal. I wish we were all able to constantly refine and adapt to the speed at which medicine changes, but there is still a lag in the latest medical advancements reaching the broad national provider network. It’s a little like trying to keep up with all of the latest and greatest tech gear. As soon as you open your new computer or phone and get it charged, it’s already out of date. Thankfully, medical advances are being pursued and achieved on a daily basis! But it may still take years for a new approach or management technique to be considered the standard of care. Contact the academic centers doing the research on your child’s special need. Find out about getting an evaluation at one of these centers. Do not feel locked into your local provider. Look around for the best of the best. If finances are of paramount concern, most pediatric academic centers have financial counselors who can help you decide if it is a possibility for your family and can help you access sources of aide. It’s always worth asking.
9. Strongly advocate for your child. Speak up about your child’s background and special needs. Sadly, even the medical field is not immune to the whole “squeaky wheel getting the grease” thing. Be polite, but be persistent. If white coats give your child anxiety, ask that everyone remove them. If your child does better in your lap, request that everything be done there, but be willing to work with the staff to ensure everyone’s safety. Ask that lab draws be consolidated and possibly drawn during sedation, if your child already has a sedated procedure scheduled. There’s thousands of these examples, just speak up. But please, do it politely and respectfully. I promise you will accomplish more of your goals that way. You CAN be relentless and respectful at the same time. Some of my favorite families are masters at this, and I respect the heck out of them!
10. Don’t get overwhelmed – ask for help. Remember you have so many resources from your pediatrician, to your agency, to other parents who have walked this same road, to medical experts specializing in the needs of internationally adopted children or in your child’s particular special need. Reach out and recognize that asking for help is not a weakness but rather a powerful way to advocate for the VERY best for your child.
– guest post by Dr. Youngblood