Tuesday, December 15, 2009

Alphabet soup-- long one

Many of us in the adoption world use this terminology when referring to diagnosis' of our children.  Most post institutionalized children, especially older ones, come with a list of dx's once home as well as some "baggage" that needs to be addressed.  Now, I have been cautious over the years of never giving my child's name w/ their dx's.  I make sure they have their own identity and are not identified by their dx's.  I want them to be known for their abilities and personalities rather than their disabilities.  Some of mine have physical disabilities that you can see.  Such as Bojan w/ his missing leg so he wears a prosthesis.  He's learned not to let it bother him.  He's very outgoing so frankly, I don't think anything would bother him--LOL.  Well, here's an example of how I let my kids handle what they want to say about their disorders/ disabilities.  Bojan likes to call his leg his robot leg & will entertain anyone curious enough to ask questions.  He takes it off, lets them hold it and see what it's about.  After that bit is over, it is back to regular kid play.  Some parents take books to school, give speeches etc. about their children.  I do not do that.  Maybe I'm lax maybe I'm just not so overly cautious anymore w/ 7 of them.  I do not do any of that stuff.  I let my kids handle thier own situations.  Okay, sometimes I will give them pointers on what to say if they ask but that's it.  Now, if they were shy, maybe I would do it differently.  There is nothing wrong w/ parents telling about their kids disabilities to a class but the sooner the kids can do it on their own, I think the better they are able to handle it later on.  My 2 cents worth, worth even less w/ today's economy--LOL.  However, I like my kids educating and showing others what they CAN do.  Sometimes it is a good idea, sometimes it is not.  We learn from everything.  You have to do what is best for your own children.  For mine, it is them educating about their own disabilities.  So, I know some of you are wondering what alphabet soup we deal with at Chaos Manor here.  Chaos Manor is what we've always called our home.  For good reason too.  Anyhow, thought I'd share what we deal w/ on a daily basis.  I will not give their names.  Just whether it is a girl or boy.  I won't even give age.  So, here goes & then we'll discuss.

Girl-- FAS(fetal alcohol syndrome)/ asthma/ OCD/ microcephaly/ devel. delays/ anxiety/ SI (b/c of it, can rarely feel pain)/ MMR(mildly mentally retarded)

Boy--FAS/ ADHD

Girl--RAD(reactive attachment disorder)/ ODD(oppositional defiance disorder)/ PTSD/ CAPD(central auditory processing disorder)/ FAE

Boy--missing leg/ missing finger/ emotionally immature/ syndactylty/ clubfoot/ urology issues/ eczema

Girl--FAS/ devel. delayed/ microcephaly/ MMR/  radial articulation/ ONH(optic nerve hypoplasia)/ probable dwarfism/ FTT(failure to thrive)/ delayed bone growth/ ASD(atrial septum defect)

Boy--FAS/ RAD/ ADHD/ PTSD/ dev. delayed/ one kidney

Boy--Deaf/ SI/ Strabismus/ severe vision trouble(debate still out whether going blind or not)/ FAE

As you can see, that is a lot of letters!  I most likely missed quite a few.  I know it sounds like such a mouthful and it is.  We have some of the dx's that most people will steer clear away from when doing adoption.  You have no idea how many kids are turned down b/c of a possibility of FAS.  Yes, FAS is indeed a difficult one to deal with.  however, like other disabilities, once you get into routine of things, it is nothing more than another disability.  Yes, you do have to parent differently.  Yes, you have to know the disorder inside & out in order to better help your kids.  But that is okay.

We also have RAD...2 RADishes in fact.  Now, that I will admit is the most difficult thing to have.  A child who doesn't trust you, who shows no empathy and who doesn't know how to give or receive love.  Until you actually live with a child with RAD, you can not fully appreciate the magnitude or gravity of the situation.  Many parents of kids with RAD are falsely accused.  The kids can manipulate many things.  For us, we videotaped just in case.  We used hold therapy on our kids.  NOT recommended if you do not know what you are doing.  We were trained by a therapist years ago & modified it some to fit our kids.  You can not imagine how hard it is to remain calm while your child is raging out of control.  The longest rage we've ever had here I think is around 3 hours straight.  During this time, we keep our kids safe from themselves.  And, keep us safe for that matter.  This typically will involve a total hold situation.  It is a chance for the kids to get all that scrambled up emotions they are feeling and cannot express for themselves out.  Sounds odd but that is how we explain it here.  Thankfully, we are done w/ the RAD rages.  While we did have them, sometimes one of the other kids would come up to the RADish and stroke their head & say it's okay(used their name here) mom & dad did this to me.  You're not being hurt, they are just helping you.  We cradle them like an infant if they're young so other kids can see they are not being hurt.  BUT, to the RAD child, they are indeed hurt.  They will "feel" pain.  No,there is no pain but in their head, it's there.  There is even a book called Parenting the Hurt Child. Many adoptive parents with RAD children end up having to disrupt the adoption and rehome the child.  We were told to do this years ago with one of ours.  We stuck it out and he definitely has been transformed.

Mental and emotional issues are tough in children.  It is something that people can not see on the outside so most will not understand.  Trust me, I did not before I had children.  Just thought maybe some parents couldn't handle their children.  Was it that or was it an autistic child or an FAS child or a traumatized child that got overstimulated and reacted?  No one knows.  Don't stand in judgement in others unless you really now the situation.  Looking from the outside peeking in will not provide enough information for you to make that call of whether it really is the parents or whether it is a child that can not help themselves.  Some of our children will revert into an autistic state if they get uncomfortable in a situation.  Crowds do this for some of mine.  This is why we go at "odd" times out to restaurants or to shop.  Helps the kids remain calm.  Helps us. 

The physical dx's for us have been the easiest part believe it or not.  Hearing about your kids' traumatized past however, that is much tougher to deal with.  How do you heal a broken soul?  A broken spirit?  We can heal a leg.  We can heal vision issues and hearing issues.  But the deeper issues buried in some of our kids is so,so much tougher to dig through.  It is hard to know what you should say sometimes.  Hard to know if you should tell them everything that really happened.  The mental,emotional, and behavioral issues that many adoptive children come home with take years to work on.  Years.  We've gotten better over the years.  I must say.  Takes patience (unfortunately, I'm not the best w/ this department--LOL), a listening ear and a whole lot of love.  We've done therapy over the years as well.  We've since dropped all therapy.  much after  awhile is repetitive.  And what burns me up is insurance will pay ALL of physical dx's "stuff" but rarely ever therapy.  Therapy does help and is needed for many adoptive children.  Insurance companies treat mental illness and health a bit differently.  Ashame b/c if many are treated early, they can become productive members of society.  They really can.  I don't wnat new adoptive parents to become scared of all the dx's.  You take one at a time, get a plan going and it all works out.  Some may see things in their kids that they never would have imagined.  Did I ever think I'd have to literally sit on top of my son flailing in bed due to night terrors?  No.  Not just a nightmare, but night terrors.  Totally different.  But, you do what you have to to keep the kids safe and to make them understand someone does love them and that they will not let them go.  I will be the first to admit though, this is hard.  Imagine if you are a parent for a moment and you've travelled across the world to bring home children that you want to love, long to love.  Now, you are home and that child is in a rage, spitting at you, hitting you, punching you, etc.  We had a family member witness a rage once & my husband holding her down.  Remember folks, we've been trained by professional therapists... please, please don't do this unless you have been shown the right way.  It is imperative to know what you are doing during a hold.  Anyhow, she sounded like she was being skinned alive.  No one was being hurt.  They were shocked at the whole experience, tried to give their parenting take on things(again, unless you have a traumatized child, you have no room to comment!), and couldn't believe the other kids just went about their business.  Why are they desensitized so to speak?  Because most have gone through it themselves in one form or another.  It happens.  It is all par tof the process and if you see my kids now, you know that they have already healed.  They were no worse for wear.  I want new parents to be aware of the potential things you don't "see" as a dx.  There are many.  Like I said, we've dealt easily w/ the physical stuff.  Someone asked me once, "Oh, it must be SO hard to deal w/ his leg (referring to the prosthetic)."  I said "no way."  It ismuch harder to deal with them if they are calling you names, spitting at you, screaming in public, etc. That type of stuff.  Invisible disabilites are truly trying on parents and require a sort of hypervigilence of sorts.  We are always aware of where they are and what they are doing.  My FAS kids have no cause & effect thinking.  Some relatives will go "punish them" or "just tell them no" or " how come they can't remember."  Umm, no cause & effect thinking so they will do the same thing over & over & over again.  No lie.  They can not learn from their mistakes.  They have frontal lobe brain damage but you can not tell by looking at my kids.  I have gotten "But they look normal." so many times.  They are who they are & we love them dearly.  Realty is that these dx's are lifelong.  They will not go away. 

As an adoptive parent, it is imperative you learn everythign you can about your future childrens' potential dx's and actual dx's once home.   We have done this w/ each one of our children.  We've been reseraching the last few weeks & asking questions for the kids coming to join our family.  Learning what we can so we can do what is best for them.  It is so interesting to see adults w/ the same dx's and see what life can be for them.  Gives so,so much hope.  I recently read a blog that treated their kids' new dx of FAS as almost a death sentence.  I really was heartbroken b/c it is not.  When people have biological children and something is wrong, they do everything in their power to help that child.  Whether it is therapy or hospitilizations or whatever.  They just do it.  That is the same thing that adoptive families do w/ whatever alphabet soup dx's that comes their way.  And you'll notice, if you follow that family, most of the time, everythign turns out a-okay.  So, despite that long list of dx's you see, it is really nothing.  They are our kids, they laugh, play, fight (shh, act like angels 100% of the time), grow, experience new things, get sick, get better, and enjoy their childhood.  Isn't that what every kid is supposed to do despite what dx's are thrown their way??  We think so.  Whatever is to come our way the next few months, we will handle it as we have in the past. 

If I said anything to offend, I appologize.  I can only speak from my experiences w/ my kids over the last 10 years.  As a parent, I am always learning.  that's for sure. 

2 comments:

  1. Thanks for sharing. I am really enjoying reading about your family.
    Vickie H.
    mama to the 7 little h's

    ReplyDelete
  2. Thank you so much for your encouraging post.

    ReplyDelete