Leah with her son AxelA bloggy friend of mine wrote a blog post this morning that I found interesting, and caused me to think again about some things I've seen in the community of international adoption over the last couple of years.
Adopting Children with special needs
It goes back to adopting children who have specific medical diagnosis such as Down syndrome, CP, etc. I KNOW Ds. Not only did we have an older child with DS when we chose to adopt, but I had spent years working with and around both adults and children who have DS. I can look at many children adopted out of institutional settings who have DS and tell you "that's institutional behavior" or "that's just a Ds thing." Not always, but much of the time. It's just part of knowing Ds, I guess. I've never seen anything Axel does that has left me wondering which it is (Ds vs. institutional behavior) but I have wondered what he's input he's looking for in various stimming behaviors. I guess it's safe to say that our comfort zone is in the world of DS.
When we chose to adopt, we started the process for a child who has Apert syndrome. I know a little about AS from previous experience, but I didn't know a lot. Dean had never heard about it so knew nothing about it at all. I started digging. Dean started digging. We both sat on our own computers researching AS. Dean made connections with other families who were raising kids with AS, and I did the same. We found there is a family who has an adult daughter with AS at the new church we were attending. We felt like we had an idea what to expect, and which specialists we needed to line up in advance of bringing this child home. We knew there were lots of very painful surgeries, and having been a mom who has dealt with a lot of post-operative wound care, I understood what that involved. I understood what it's like to see my kids in physical pain after surgery. We also looked at our proximity to medical care necessary for a child who has Apert syndrome. We live close to all of it. And isn't it funny now that we're going all the way to Philadelphia for Axel's AAI? But that's my point I guess...the ability to access the specialists needed. Anyway, in the scheme of things we felt prepared. There would still be surprises, and struggle, but we had prepared as much as possible without actually having the child to care for.
In the end that isn't the child we brought home. (Someday maybe we will, it hasn't been for lack of trying on our part!) Instead we brought home Axel, who had no known medical issues. (pretty unusual for a kid with DS, and foreign to me since Angela has almost everything a kid with DS can have. LOL) But we also knew that Axel's little body was probably hiding some secrets, and boy was he! Still, once we're done dealing with his neck he still has a few minor medical things to address. These were put on the back burner as soon as we found out about the AAI, like getting his tear ducts cleaned out so his eyes aren't constantly watering.
Why don't parents who adopt do more research?
So while reading other adoption blogs, I'm a bit shocked when I see people who've never parented a child with complex needs adopt kids who have just that, or big name diagnosis, like DS, and they do NO research about the issue. Like, nothing more than light reading. They're still in the "Kids with Ds are so sweet!" mindset. (Angela will dispel that myth for you, by the way.) Probably part of the reason this is so confusing to me is my nature is to dig for information. I am a research junkie. I've seen families who have older kids who are non-verbal not give them any way to communicate, either sign, a device, PECS or anything. Now if their child won't use them, that's one thing, but some don't ever bother to try them. Not because they don't have the resources, but because they don't want to. Really? REALLY! Like the child they've brought home will NEVER go out in the world and have to communicate his wants and needs to anyone other than his or her parents. REALLY?
Why don't parents who adopt do more in general?
Here's another issue that I'm seeing more of: Families who adopt children with complex medical needs, but they happen to live quite a distance from the key medical facilities they will need to frequent with that child. That's fine if you are comfortable driving the distance. I did it for years with Angela before moving to "the cities". I had to learn to be comfortable driving downtown, and through the worst parts of the city since all the children's hospitals seem to be located in the highest crime areas. (Why is that anyway???)
What I have seen are parents posting things such as "There is just no way we are driving back and forth to the city once a week. We don't have time for it, and besides, I am not comfortable driving in the city." Really? So you bring a child home who needs medical care, and just don't do it because YOU don't want to? Didn't you know when you adopted this child how much TIME all the medical stuff takes? Doesn't that fall under the realm of medical neglect?
I have seen other parents refuse therapies for their newly adopted children because, "We accept them just the way they are." I'm sorry people, but while it's great that we love our children, and yes they are now getting FOOD, a FAMILY and LOVE, there are other things too, like speech therapy, occupational therapy and for some kids feeding therapy that they may need to overcome the delays caused by their years of severe neglect. I have a lot of friends who have turned down early intervention services for their biological children who have special needs. I "get" the intrusiveness they're avoiding. But when we bring these kids home out of institutional settings, this is more than just trying to help a baby keep up with their peers. This is YEARS of catch up. We cannot expect that our children will stay with us forever and never want to get out on their own. What child wants to live with their parents forever? Not only that, but we, the parents, could get hit by a mack truck tomorrow. Our job, as a parent of ANY child, is to help them reach their FULL potential so they can function in society as independently as possible. That's our job, weather our children are typically developing or not. NOBODY wants to be dependent on anyone else, and our kids who have disabilities are no different.
Jumping down off my totally judgmental soap box now.
Read more from Leah at her blog, Garden of Eagan.
Totally agree with everything you've said! I see it soo and it really makes me wonder....and sad for the children who are getting the services, therapies,etc. they need just to catch up. Is it because we had children with Ds before we adopted? Might be.... cuz Grace is as far from "so sweet and loving" as you can get. In fact, she is my most difficult child and has made it her mission to dispel almost every myth about Ds. Hopefully, that will also mean dispelling the bad myths as well... :)
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