Saturday, May 5, 2012

Alphabet Soup Dx's

FAS, RAD, ADHD, PTSD, ODD, OCD, SI, MMR, HOH, PI, ONH, c-ACC,  , FTT, CAPD, ASD, AN, aka, and the list goes on and on and on.  What are these alphabet soup of dx's?  Well, it is just a smidgen of the dx's my kids have.  Some aren't abbreviated like deafness, anxiety, microcephaly, colpocephaly, developmental delays, institutional autism, club foot, syndactylty, missing digits, scoliosis, idiopathic short stature, processing issues, radial articulation, asthma, eczema etc.  I really could go on.  Many folks focus solely on what the "issues" are and not what the child is.  Yes, sometimes I'll mention their dx's.  For the most part though, I tell what they're up to or their personalities.  In our house we have a saying "you are no different than anybody else."  Period.  I don't care who you are or what you have.  I will NOT let my kids use their disabilities as an excuse.  One tried to do that the other day. I was on them like flies on honey.  Just wasn't going to happen in my book.  Nope.  You are who you are. 

Let's talk a little about these dx's.  First, I know some may not know those abbreviations.  So, we'll start there.

RAD-- Reactive attachment disorder
FAS-- Fetal alcohol syndrome.  Now they say FASD to encompass more.
ADHD-- Attention deficit hyperactivity disorder
PTSD-- Post traumatic stress disorder
ODD-- opposition defiant disorder
OCD-- obsessive compulsive disorder
SI-- sensory integration
MMR-- mildly mentally retarded (yes, that's how they worded it)
HOH-- Hard of hearing
PI-- Post institutionalized
ONH-- Optic nerve hypoplasia
c-ACC-- complete agenesis of corpus callosum
FTT-- failure to thrive
CAPD-- central auditory processing disorder
ASD-- atrial septum defect
AN-- auditory neuropathy
AKA-- above knee amputee

Now, I am not going to name what kid has what.  See no need in that.  What are the two things I probably know the most about?  FAS and RAD.  Hands down.  I can spot a RADish a mile away as well as an FASer.  It was like one co-worker explained to me years ago.  I was working in Blockbuster w/a 20 something yo co-worker.  Yeh, I felt old.  LOL.  Anyhow, I had 4 kids at the time and getting ready to get Bojan.  One of mine walked in the store.  Literally, just walked in.  John said to me your son has ADHD.  I stared at him and said how on earth did you know that?!  He said we just "know."  He had ADHD too.  He said it was how he walked in.  I never noticed that before.  Yet, this guy did.  Why?  Because he lives it.  Just like last trip back from Russia.  Met another little RADish on the plane.  And sure enough, her parents knew something was up and asked me for advice of what to do next.  I think we can spot a RAD kid now or an FAS kid now as we live it day to day.  24/7.  We know the mannerisms, the quirks, the cycles they go through.  For us, it's second nature.  When you live FAS all day everyday you get to know it.  Yes, I refer to FAS as an it.  It is a separate entity as it is NOT who the child is.  The child has this disorder.  But it definitely does not define who the child is.  personality does that. 

I have many dx's that I didn't list.  Half the time, I forget what they are unless I look on the paper.  Yes, I could easily get more dx's I'm sure.  However, we choose not to go that route.  Just like we don't pursue every therapy under the sun when the kids first get home.  Summer qualified for OT, PT, and I'm sure speech.  She was evaluated at a 2yo level.  She's 5yo.  Would it have benefited her?  Not sure.  It would not have hurt, that' s for sure.  But look at just how much she's learned from watching siblings, taking time to soak up what's happening around her, etc.  She would have surpassed most those goals by now.  No doubt.  I will get an update done on her soon.  You'd be shocked at how far she's come.  Bottom line is kids are resilient.  They bounce back.  Take them out of the situation/ orphanage they were in, and put them in a family.  Does a family fix everything?  No.  Sure helps though.

I think many new families to adoption focus on all the dx's and what's going on w/ that, it's hard sometimes to see the child and what they are like.  Alyona came home malnourished, failure to thrive, FAS, ASD and a pile (And I mean a pile) of other dx's.  Didn't matter.  Yes, we got the heart checked out first.  She was 7yo and weighed 22 or 23 pounds I believe.  Can't remember exactly.  I read blogs about weights of kids and how shocked folks are.  Many children come home this way.  Yes, some are in severe shape and those need to be addressed immediately.  The others though, time, love, good food, and family go an awful long way in the grand scheme of things.  Once the kids are checked out medically, we focus solely on attachment/ adjustments to the family.  No therapies, no outings, etc.  Just family for a bit.  Then, after 6 months, we determine what therapies they may or may not need.  See, the kids lived without us all these years and survived.  All orphanage kids imo are delayed.  My opinion.  It's the environment.  Once home though, they catch up super fast.  After a few months, we then see what their needs are and what changed.

Why am I writing all this?  Because we are approaching that mark on the Bulgarian kiddos.  Older kids need nothing.  Summer does not need PT or OT.  She's doing awesome w/ soccer helping her in the PT department as well as a trampoline, swing set, etc.  OT, she is doing school w/ her sibs and feeding herself.  We will be having her evaluated for speech.  She's behind but even our therapist said she won't need much of it. I concur.  Having this time though, gave us time to get to know her.  Not her disorder.  I believe that's what new adoptive parents need to do.  Yes, some of these dx's can be scary.  Trust me, first time I heard a few letters, I didn't know what to think.  I don't ignore what my kids have.  I just love who the kid is. 

Don't get me wrong.  I am not against therapies, not against dx's or finding out what's wrong.  I am against rushing into everything.  See, I've seen the before and after.  I have teens now that were adopted years upon years ago.  Orphanage rocking so bad that you would have thought their head was going to explode.  No joke.  Did we do anything for that?  No.  Let nature take it's course and provided love.  Rocking subsides.  Some do it from time to time but hardly ever and never as violently as when they first arrived.  And have you ever had to hold your kid down while a night terror was going on?  Wow!  That's an experience I care not to relive.  But they survived. And they are thriving and living life.

Some of my kids came home from horrors I have yet to share on here and probably never will.  Some things remain private.  A movie would be more believable than the reality some of them had to endure and live day after day. Yet, you've seen the pictures.  Resilience.  They have overcome much in their young lives.  Just thought it was time to share my thoughts on some things as I follow other blogs too and see what goes on.  Many things are on medicals over in EE that once home, the kids don't have.  That was true w/ many of our kids.  Many.  Does that mean the facilities over there didn't care about them?  No.  It's just a different culture, a different mindset.  It's not the same here.  However, go back about 50 or 60 years and see what the feelings were towards the disabled back then.  Not the same.  Shoot, adoption was kept secret for years in America.  Other countries need some time to catch up too.  Years ago in America people were told to institutionalize those w/ Down Syndrome and other disabilities.  People don't do that here much.  Things have changed but it's taken lots and lots of time. Yes, some orphanages are bad.  Many are not though.  Okay, it is NOT the same as a family and I get that. Please don't misinterpret.  Many places try their hardest with the little resources they are given to care for the kids.  And then there are the horrible places. A few of my kids , not many, came from such facilities.  They should not exist.  But the majority I've been to truly try very hard to care for the kids.  I guess I just don't want new people to to read adoption blogs and getting a bit hesitant b/c it sounds as though all the kids coming home have major, major issues or the orphanages are horrible.  That's not the case at all. 

Over the last 12 years in the adoption community I've seen lots of changes.  Lots.  Some good, some not so good.  I don't like how some fellow adoptive parents treat others on blogs.  Some things said are downright mean and hurtful.  I do like how many have rallied together for other families.  I do like how awareness has been brought to the forefront for the orphanages. I would love to see more orphanages that try w/ all their heart to do what they can for the kids be brought to light and spoken of.  Some of these caregivers really love the kids they are made to care for.   Some of mine took the time to make baby books for my kids.  Take pictures of them.  I'm in touch w/ many of the previous caregivers still and wouldn't trade that.  See, many of these orphanages do NOT get the PPR's.  They go to the governments and ministries and caretakers never get to see how the kids flourished at home.  I think that's ashame.  So, I send pictures or care boxes when we can.  Let them know we're still here, still thinking about them and our kids are doing great. 

So much more I could say.  I don't really have a point to this post.  Just seen some things lately and want to make sure others know that not all is bad out there. Yes, it could definitely use a change.  I agree with that.  But over my 12 years, I have seen great sacrifice amongst birth mothers and caregivers alike.  I've seen true love for the kids.  I"ve seen deep, raw emotions of love.  I want that side to be told too.  I think it's important as much as bringing light to some of the not so great things.  I've seen humanitarian aid over the years do SO much, nutrition programs, grandmother programs, programs for job skills for older kids, etc.  Lots of good trying to be done.  Playgrounds replaced.  Yes, the playgrounds over there are horrible.  I've been to enough that I didn't even want to sit down at the last one.  However, that is not their fault.  They are doing the best they can with what they have. 

I know all about corruption too though.  We were caught up in it and witnessed it firsthand during 2 of our adoptions.  Will never forget it.  Seeing someone in power who is supposed to be caring for the kids taking from the kids makes your heart want to hurt.  But you can't let it.  You have to see the good that totally outweighs the bad the majority of the time. The many, many orphans that are adopted each year.  The programs set up for those left behind.  Organizations set up for nutrition.  Agencies set up for adoptions.  Orphan conferences set up.  I could go on and on.  Things are changing I think for the better.  But things are changing and I want people to see the good too. 

I truly hope this post didn't come off wrong or offend.   This is not in any way  shape or form directed at anyone.  Not one bit.  It's just a general post saying I want to bring to light some of the good that is happening around in the adoption world.  After 12 years of being in the adoption world, I can tell you I have seen both good and bad all these years.  I've been part of the good and I've experienced some of the bad.  I've seen people lose tens of thousands of dollars by agencies.  I've seen agencies bend over backwards to help a family.  We were one of those families.  There is just so much good I've seen over the years I just had to say something.  I also wanted to say in the long run, it's not the dx's of a child.  It's the child that matters.  Bottom line.  It's the child that you longed for, wanted for so, so long.  The child that you wanted to parent that you crossed an ocean for them.  Despite the bad that you saw and heard, the nerves, the unknown, all you cared about was  your child getting home safe and sound in your arms.  Isn't that what adoption is all about anyhow?  The child. 

1 comment:

  1. Stephanie, I really appreciate what you had to say as I'm a newbie and I'm taking everything everyone says with a grain of salt but you said it in such a way that it really makes SO much sense. It is interesting that you can spot certain mannerisms just from experience after al those years. That has to be very helpful! Again, thanks for writing this post!