The invisible disability

One of my children has an invisible disability. Another of my children suffers from effects of the same invisible disability. This invisible disability is called Fetal Alcohol Syndrome, or FAS. FAS is caused when a mother drinks alcohol while pregnant. We are talking about more than a glass of wine or a sip of beer (though I believe that pregnant moms should not drink ANY alcohol - read on and I will explain why!).

You can read all about FAS online... just google it and you can find more information than you ever wanted! In a nutshell, FAS is brain damage done prior to birth. This brain damage can manifest itself in many different ways. The large majority of children born with full blown FAS have distinct facial features and will have true mental challenges. Not all children will have distinct facial features (hence one of the reasons it is called the invisible disability). There is also a condition called FAS-D... or Fetal Alcohol Syndrome Disorders. FAS-D is basically the same thing as FAS, except it is usually not as severe. I am no expert and am not going to get into the guts of the whole thing - but I wanted people to better understand that yes, it is a true disability.

FAS messes with the brain and brain development. It can and will show up differently in different children. FAS can be the cause of or act like ADHD, ADD, ODBD and many other diagnoses. FAS can also cause the brain the function differently than the "normal" brain. Things like learning delays, behavior problems, memory challenges, impulsiveness, sensory issues can all be more prevalient in kiddos with FAS.

There are alot of people out there that will argue that FAS is not a disability, but a behavior problem. Unfortunately, it IS a disability. Since rarely can brain damage be fixed - it is permanent. While my kids don't have a wheelchair or a walker, are blind or deaf or cannot take care of their own person - they suffer from something that they will always have to live with.

For me - FAS has been a challenge that has been ongoing. It challenges me to parent each child differently. To micro-manage one child, while allowing the other immense amounts of hands-off parenting. It is a daily grind of being one-step ahead of each child and being able to head off disasters before they happen. It has alienated our family in so many ways... one child can't do sleep-overs unless there is immense amounts of fore-thought and planning, one child cannot attend birthday parties without our supervision as he gets too over stimulated and will make very bad choices, playdates are a rare thing unless we supervise it as both boys can do things that make it a major disaster for all, homelife has to be kept on a tight schedule or we end up dealing with meltdowns and bad behavior.
Another challenge for us dealing with FAS is the fact that the children do not truly understand why they do what they do. Often their impulsiveness, and bad choices are very spur of the moment kind of things. For example, about a year ago, the kids and I were walking on a sidewalk along a busy road - we were only going 2 blocks on the way to McDonalds. One child would not listen to me and walk in front of me. Typically, I usually have myself walk closest to the road - holding one childs hand, and the other two walk infront of me. The child in question finally moved in front of me... then decided spur of the moment to jump off the curb about 12 inches or so into the roadway. As I leapt forward to grab him - a car came to a screaching halt about 8 feet in front of him. The whole incident scared that crap out of me - and of course the driver of the car - for if he was not paying attention - would have hit him. These kind of incidents seem to happen more often than not - only on different scales.
It seems that FAS can act differently in different kids. Again - that makes it really hard! When you see a child that looks fairly "normal" doing something off-the-wall... you question what the kid is doing. You see a child that may have a visual or physical disability - you don't question things so much.
Over the last few years, I have had many discussions with friends and people who I used to think that were friends, that related to how "I" parent my kids. Most people accuse me of being way too overprotective, too sheltering, and too strict. I don't feel on many levels that sharing with most people that my kids have a "diagnoses" is appropriate. I would rather people look down their nose at "me" than to put a label on my kids. Some parents are ignorant to the fact that when they say things like "Oh that's too bad that "x"'s birth mother was a drunk - that would explain why...."blah blah, that their children are listening and of course will repeat it.

I hope that sharing a bit of this will help others to stop and think a bit more before they judge!

Not sending our dossier to Ukraine

We have made a really tough decision to NOT adopt our boys older brother, Sergey. For the last 6 months, we have been quietly putting together our "dossier" - which is a huge stack of paperwork that needs to be submitted before you can apply to adopt any child internationally. We have everything all apostilled and in order. This decision has been hard and heartbreaking, but we feel that bringing Sergey home with us would not be the best choice for our family.
Sergey is 16 now... he is aging out of his orphanage next month and will be sent on to vocational school to try and learn a trade. Over the last two months, we have learned alot more about Sergey, his strengths and his challenges. We have looked into all sorts of possibilities that would have assisted us with being able to bring him here. For a long time, finances were an issue that slowed things down. We got past that hurdle only to hit another... one that was alot harder to get over.
Sergey has a condition that is similar to one of his brothers. I will get into this condition in another email... but put simply - this condition, while invisible to most - is a true disability. We have had countless emails with two people in Ukraine who have done a wonderful thing by helping us stay in touch with Sergey and get to know more about him. While we have never promised adoption to anyone - the hope has always been there that this would be a possibility.
Over the last couple of months - we have learned much more about behaviors and challenges. While many of these are typical teenage things, they also follow a pattern that makes things more difficult.
We decided that we could not in good conscience add Sergey into our family. The kiddos that we already have present so many different challenges each and every day - we felt that for their well being that adding an older child with a new set of issues would be damaging to the progress that we have worked so hard to obtain.
While we will continue to advocate and support Sergey as best we can.. it does sadden us that his dream of having a real family will have to wait until he is ready to start his own. Just a thank-you to those of you who had sent me emails over the last couple of months... its been a journey that we have learned from. We really had high hopes that we could bring him here and help to "fix" things for him.. unfortunately, it was not meant for us to do.

Long time - no post!

The last 3 weeks have been pretty darn busy! It seems the only times I am sitting down at the computer have been to pay bills and check a few emails! I just downloaded pictures from last month and thru the 2nd... boy am I behind!

I have had a bad head cold for about 2 weeks - I am finally able to sleep at night and get threw the day without any meds... whoo hoo! I have been busy wrapping up my activities at the kids school - what a relief! And basically trying to keep all the critters around here alive... which is a tough task! I am about ready to take our "sweet" little lab, Phebe and find her a new home! She had killed off my second batch of chickens and 3 guinea hen babies! So, out of the 24 chickens I have had at different times this spring - I have 4 left. Not a good ratio! I am hopefully getting my last and final batch today... third times a charm???? We'll see!

Big Al got back from 5th grade camp... 2 days in the woods with no sleep - and we are still enjoying the effects of that! He has been busy each day working with his pigs and winding down to the end of his elementary career.

Little J has been a pistol. He has been a turd at school and at home...so ALOT of energy has gone into trying to manage (and not strangle) him and his behavior. It has been challenging to say the least! He is enjoying his new piggies too!

Miss O has been doing really well... still growing like a weed! She had her training wheels raised up on her bike - and now she does not like riding it at ALL! She has reverted to the trike! That's ok... she is still really young to be riding a bike anyways!

Other than those things... just trying to get back to getting ready for summer and having three kids home for 2 months!!

2009 Fishing Derby

We took all the kids to the Kiwanis fishing derby at the pond. All the kids had a great time... nothing like hanging out around a stinky pond with kids all over the place "trying" to fish! HAHA!
Both boys caught 2 fish each! Big Al won 2nd place in his age bracket for largest fish! It was almost 14 inches long... he got a new tackle box, with some gear and a free pizza! Not bad!
Little J didn't win anything - but he did have a good time!

Big Al with his prize... he was really thrilled to win something!

Little J showing off his first trout that he caught... not a prize winner - but he had fun!

Miss O gave up on fishing and went to play games!

Little J concentrates hard on the fish! He has learned to become more patient when fishing! Too bad he did not use that patience during other times!

Big Al had fun... it was unfortunate that he did not listen to Mama! There was a board in the water - sort of half sitting on rocks... I told him to NOT stand on it... more than once! Before the day was over - he stood on it again and quickly fell in... the stink of pond did not seem to bother him!

Miss O enjoyed about an hour of fishing and then gave up! While she likes fishing - just not very much of it!

Introducing.......

And the drumroll please.......

Welcome to the boys new pigs!

Bill and Charlotte - Big Al's new piglets!
Oreo and Sunshine - Little J's new piglets!

My sweet girl

I took some really sweet pictures of Miss O.. I just had to post them! She has the sweetest heart when it comes to outside animals (cats - not so much!)!
She just LOVES to be outside... practically BEGS to be out there! Since we had such a nice day yesterday - I caught her in a few of her sweet little gestures!

Miss O just LOVES to brush the dogs.. the dogs, well, they tolerate it! PJ loves to lay in the sun - so he sort of lumps out the whole brushing episode!

Bunny, my horse, she is not the sweetest creature on earth... in the beginning - she chased the cows down to where she had to be seperated by acres as to not kill them! Either the mothering instinct kicked in - or she is just bewildered by them! Since our little Bambi has been ill.. she likes to stay near him and check on him every so often...

Miss O loves to spend time sitting and talking, hugging and petting Bambi! Since he lays around alot - he is a great pet for her to love on! She wants him to feel better and is constantly asking him if he "fes getter"? (feels better!)

She just loves her critters!

Happy May Day!

The boys spent May Day getting the new addition to the pig pen done for Little J's new pigs! It was supposed to be a "Papa and Me" project - but Big Al just can't help himself and has to take over... not a surprise!!