Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, August 05, 2011

Ramblings from this morning

A 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.

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.

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?

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.

12 comments:

gillian said...

Thank you for this post, Leah. It's convicting to me in a good way. I'm glad you always have the guts to say what we need to hear.

I don't have anyone for my friday feature today. Would love to repost this if you don't mind. Let me know. gillian@rcn.com

Tamara said...

You have to be kidding. I obviously haven't read the blogs you read, but it makes no sense to me that someone would be so adverse to driving into a city that they would ignore a child's medical needs. But, then, unlike you, I've never understood how early intervention services can be viewed as intrusive. I went after anything that could help my kid that had some decent research behind it and I could afford. And to not do whatever you can to help a child communicate has never made sense to me. That's just cruel. A person needs to communicate. Even if it wasn't working, I think I'd keep trying. How frustrating to not be able to make someone understand your basic needs.

Min-aha said...

Thank you for posting this. I read your blog all the time and have never commented until now. I read adoption blogs and often think people must idealize what it will be like when the child gets home. I'm in the process of adopting, and it's been hard, but I know the real work starts when the child gets home. Sometimes it seems like adoptive parents get the child home and think the work is over and life goes "back to normal", meaning the way it used to be. How many times have you read someone say they can't wait til things settle down and go "back to normal"? I always read that and think, there is no "back to normal"! I think people get caught up in trying to "do the right thing" by adopting a child in need but aren't prepared to actually parent the child's needs once the child is home.

Kelley said...

I've been trying to think which of your posts is my favorite. I've been reading over 3 years now and there are lots, but this one is definitely in my top 5.
I am not an adoptive parent, but I love adoption. I want to "save" ALL these kids, but realize it's just not that easy. I appreciate that you say the hard things and how you love both your kids at home (and the other boys too of course.)
Love, Kelley

Linnea said...

Please tell me its a small number of people who are doing this?! I am shocked yet should I be? I have a friend who refused specialists, ECI and any therapy for her child because she thought therapy was stupid and wouldnt work. Here I am fighting to get my child more services and better care, almost daily fighting. I also refuse to go to the hospital 20 mins away because it does not give my son the best care instead I travel new roads for over an hour with 5 kids to get the kind of care my baby deserves.

Our children only do so well because we are getting them the services they need and pushing them and the therapists and the doctors to do better.

Be blessed

Ashlee

Ellen Stumbo said...

And then, there are places where you try to get services for your adopted child and they have the guts to tell you they do not qualify for services (picture me rolling my eyes) I guess having Cerebral Palsy and spending 4 years in an orphanage was not enough.

eliz said...

AMEN!! From an adoptive mom who runs a Group Home for adults with disabilities (many with DS) in MN.
And yes why are those hospitals in the high crime area?

Speechless said...

Well, you know that I agree :)

Twilson9608 said...

Im like you in the way that I need to know what I am looking at. I need to know what, when and how to deal, teach, learn and give. I like to know all of my options and I like to know where to start with those options. I love reading your blog because often you will mention things things that I have to look up to understand. Our children are far apart in age but many times, your writing prepares me in ways that books can not. ;)

Roxy James said...

Leah,

This post (by another RR family) seems to be a response to your (excellent) post:

http://www.minivansandmomjeans.com/2011/08/how-can-we-know.html

I left a comment* noting that the main difference between the "preparedness" of adoptive vs biological parents of kids with social needs is the level if outside scrutiny -- by social
workers, homestudy agencies, state and federal governments (fingerprints, security clearances, etc), the government of the country from which you are trying to adopt, etc.

I mean, what is the point of OODLES of scrutiny if not to ensure that the adoptive parents of a kiddo with special needs are as prepared as humanly possible to care for them?



* which hasn't yet appeared... The comments are moderated, so I am hoping it will appear soon.

Karen said...

Bravo lady. I've been trying to explain this to my husband and while he gets it to a certain degree, I wish I could communicate this to my (DS)step-son's mother who, whilst she tends most of his needs (he lives with her far away from us), does not feel the need to teach him to talk, count, read or interact with other people. Nor will she acknowledge when I try or any of our work with him. It just gets ignored. He can program a DVD player at 10 paces but he spends all day watching TV and drawing in his room. I've known him for 8 years and he's regressed in that time, has become obese, is fixated with TV and more. I've struggled ever since I've known him to get people to give him more (time, attention, skills) so that he can be more. No-one wants to hear it and mostly because they are just too lazy. It's easier to put on the damn TV and throw him the remote. Who knows what his life will be but he surely will never realize anything close to his potential. I am and will always be sad about that, and to some degree culpable also, despite my best efforts to get anyone to listen. It could make me cry.

AZ Chapman said...

reading this late but i want to say

Bravo great post i agree with u