Wednesday, May 22, 2013

Birth Mother Day, Mother's Day, 7 months, Dance Recital, and Graduation. A Wee Bit Behind

So, I am behind. Kind of a lot. I really wanted to write something deep on Birth Mother's Day. This is such a complicated day for me. I have all of these notions in my head about Eva's birth mother, but I literally know nothing about her.  I know a lot about Darcy's birth mother.  Too much. I wish I didn't know the things I know.  So it is hard. But, I didn't write anything awesome and deep. 

And then it was Mother's Day (which was also my birthday this year). This was Darcy's first Mother's Day.  That is a pretty big deal, right?  Did I blog? No. 

Darcy's 7 months home anniversary came and went without a blog post. I was in Ukraine still waiting on a court date for Eva's 7 months home.  So relived to not be in the midst of anything so difficult and emotional at this milestone.

All 3 girls had their dance recital, which was so amazing to watch. I was so proud and the girls had so much fun.  Did I write about it? Um, not exactly.

Why did all of this slip by without an online update?  Because I am parenting 6 children.  Because we were busy baking and eating cakes, making and opening cards, going to the park, rehearsing, dancing, and living!  It has been incredibly busy and, over all, incredibly fun. So, please forgive me for not staying on top of the updates, we have just been going full steam ahead.

I will tell you all about the huge milestone we just marked-Eva graduated from Kindergarten!!  We had rented a room at the local library, but we ended up having it out front on the library lawn. It was perfect!  Eva read a Bob Book and received her diploma.  We made a display of some of the work she has done this year.  I got all teary eyed and choked up.  After being told all the things Eva wouldn't be able to do, it was so amazing watching her stand up there in her cap and gown and read.  It was moving beyond belief to look at her next to the things she has worked so hard on. She has come so far. So much farther than I think anyone expected.  She likes to prove people wrong.

Then we had cupcakes and punch and the kid ran around and laughed and played. It was just a really nice day.

So I think we are all caught up now. I will add some pictures and we will just pretend that it hasn't been weeks and weeks of unblogged about milestones.




Thursday, May 9, 2013

FAS Clinic

On the 29th of April a friend and I took our children who have Fetal Alcohol Syndrome to Atlanta to visit the Neurodevelopmental and Exposure Clinic at Emory University. The goal was to get an official diagnosis for our kids.  The hope is that, Eva will then get the correct treatment.  I have had a hard time finding specialists in Birmingham that seem to really get FAS.  She does not have autism or ADHD and treatments for those things will not help her.

So, we got up at 4 in the morning and drove over to Atlanta. It was a long day.  First we saw an education specialist who was awesome.  I can't say enough wonderful things about her. She didn't bash homeschooling and she was very supportive.  She was encouraging but realistic.  She reminded me that Eva might receive another diagnosis of mental retardation at the clinic, but that wouldn't be the end of the world. She explained that children with FAS often have a rapid upshoot of progress, then they regress and platue. The norm with FAS, I was reminded, is forward, back, up, and down.  That will be our reality for the rest of her life.

Eva was doing her testing with a Psychologist during this time and then I went in to meet with them. I answered questions, but didn't get many answers myself.  The test will be scored and the information mailed to me 2-3 weeks from the date of the testing.  So, I wait anxiously to see how it went.  She was only home 5 months or so when she had the last testing. Now she has been home for 15. Her language is stronger, she has been exposed to more, and she has been through some testing and schooling. 

Next we had to wait for 2 hours to see the geneticist.  Eva held up well considering. I saw birth mothers in there getting diagnosis for their children.  That was brutal. I had so many mixed emotions. So hard to see these babies and now what they will face. And it could have been prevented. 

The geneticist was an experience that I am not ready to talk much about.  But, he measured every inch of her body, examined features, asked questions, and had Eva do some tasks.  At the end he scored her.  Up to 10 is normal.  10-15 is FAS.  Eva had an 18 with a suspected 21 or 23 if we knew her birth history (there were points for low birth weight, prematurity, etc. that we suspect but don't know).  So, we got a solid FAS diagnosis. 

Then we spoke with a psychiatrist.  It was uneventful. He was really nice, but we just kind of talked about the things we had discussed with the psychologist. 

Then we went to Trader Joe's and IKEA. I threw the keys to my husband's truck in the trash can at Trader Joe's by accident.  That sucked and caused us to get stuck in Atlanta rush hour traffic. No fun.  I made it home at 10 p.m.  completely exhausted.

I really hope we get the packet of information soon.  They did give us some booklets about FAS which are rather depressing.  They tell us that the highest developmental level Eva can be expected to reach is 8-10 years old as an adult.  Reading the booklets is like reading a checklist of Eva. Sometimes we go a day or two with minimal issues and I start to think that she will get past this.  And then we are slammed backwards and I remember that brains don't grow back. FAS is forever

A friend had a great analogy that thalidomide was such a bad teratogen that it caused limbs not to grow. Limbs don't grow back.  Alcohol does the same thing to brains. Eva's head is the size of an 18 month old.  The skull grows with the brain. So, that means her brain is the size of an 18 month old.  That affects her.  It always will.

And I have found that dealing with these things is lonely and isolating.  Even among other adoptive parents, no one wants to hear about FAS or talk about it.  I have a friend who has adopted 5 times, but only the most recent child has FAS. This last adoption is breaking her. And she is experiencing the isolation as well.

I think part of it is that people just don't understand it.  One day Eva can be fine, and another she is in 2 year old mode, and another she is incapable of interacting and functioning. You never know how she will be.  Seeing her in small doses doesn't give you the picture of Eva. So, they may not believe that Eva has the troubles that she has.

I also think it is human nature to make things OK.  They don't want things to be bad, so they push it away, or ignore it. Statements like, "My typical kid does that", "But she is so smart", "It will get better over time".  These things invalidate the experience of the parent and the child.  She is smart.  Some things might get better over time.  Other things most certainly will not.  She will always struggle harder than anyone else to do normal things. Acting like her issues are worse than they are doesn't help her. But acting like her issues are not as severe as they are doesn't help her either.

And I get the feeling that people think that FAS parents are saying that we have it harder than other parents.  That we want sympathy. Neither of those is true. Adoption is hard under all circumstances.  I don't want anyone to think that I am downplaying their struggle when I talk about mine. I just need help processing and coping.

One of my struggles with FAS is that I pour my heart, soul,and energy into trying to help her and it may never make any significant difference in the long run. She will certainly do better because she is here and getting help.  But, she will never be an adult who can function without support and help. And we can't know to what degree.  It is so unknown, which is scary. That is OK, but parents need to be able to talk about the pain of that.  Before we brush that away, we need to really think about how we would each feel if our child was diagnosed with a lifelong disability that will certainly be a daily struggle.

And she already struggles. After weeks of huge progress in learning to read, she forgot how.  Tears welled up in her eyes. She looked at me and said, "I read this before". She was scared and freaked out.  She had lost an ability that she had just the day before.  And she knew it. It was horrifying watching her realize that she can know something, and then just simply not know it anymore.

I feel like the reality of her diagnosis is setting in for the first time. I am a parent who is trying to cope with the news that her child has a forever "disability" and I have no one to talk to. No one that can understand. Even other parents with children with FAS can't.  If you have met one child with FAS, you have met one child with FAS.  They are all affected so differently. 

But it is our reality. It is her reality. We just keep moving forward.  Yesterday we moved back in the reading book and started over.  She did well.  If she forgets tomorrow we will start over again.  When she starts stimming we redirect.  If she is in toddler mode, we parent her as if she were a toddler. When she wets her pants we try to retrain.  We just keep on keeping on. 

I look forward to getting that packet in the mail and then talking to the docs about some things we can do specifically for Eva.  I know there is much for me to learn on the way, and I hope I am enough to give her the best chance in life.  As always, one day at a time.

Saturday, April 13, 2013

Darcy 6 Months

Today is 6 months home for Darcy.  6 months is such a huge milestone. We left for Ukraine the day after Eva's 6 month. I can not even wrap my brain around that right now.  I don't know how we did it.  I know I could not do it now. I also could not imagine leaving Darcy for weeks at this point. Her attachment issues are so much deeper than Eva's ever were. She is not ready to stay with anyone else overnight and she is certainly not able to stay anywhere but home for an extended period of time.



So, how are we doing at this point?  Well, we are all over the map. I talked a good bit about this the other day, so I won't repeat myself too much. I am going to tick off a list of what we are doing right now, it is not judgement.  These are all normal, understandable, and to be expected. I just like to keep track of where we are so I can see where we are improving, what we need to work on, and how far we have come.


Attachment is getting noticeably better, but we still have a good way to go. She has a preference for us, but doesn't understand really that there are things she should ONLY get from us.  Learning to differentiate between immediate family, extended family, friends, acquaintances, and strangers has been hard for her.  But, I do see definite improvement.

She still struggles to play, especially for any length of time.  Again, I see improvement.  She is playing with Seamus more and more.  That is good.  They are on the same level in a lot of ways, so she can play with him until she learns to move onto playing with Aine and Eva and then, perhaps, kids her own age. More and more she is building things with the blocks she is given, although having dolls interact with the things she builds (zoos, kitchens, castles, etc.) is a bit beyond her skill yet.  However, just making real things is massive improvement. The kitchen she makes is quite impressive.


Darcy's attention is still very short.  A simple story book is too much. She gets about 1/2 way through.  Part of that is probably language though. Her attention is improving as well, but it is one of her biggest issues.  She really struggles to focus and pay attention to anything for long.

She still has food and hoarding issues to some extent.  She is the pickiest eater ever, but she wants the food in front of her anyway, just in case. She doesn't throw anything away. I keep finding trash in her cubby because she doesn't want to let anything go.  Today I tried to swap out her winter clothes for summer stuff, and she was panicked by that.

Her speech is picking up as well, but it is also an area we are trying to focus on. 


I think overall she is doing much better lately. I was starting to worry, to be honest, but in the past few weeks the improvements have accelerated.  She really needs to just get settled, comfortable, and learn to trust us more than anything. And only time and effort on our part will make that happen.  We try to keep a basic structure to life.  Life is pretty predictable.  But she was with her first mom for 2.5 years and then in the orphanage for another 2.5. She has only been here 6 months. It will take awhile to realize this is for good. 

The other kids are doing well with her.  Aine and Eva love having another sister to play house with.

I am so thankful we are not having to turn around and leave at this point. I am glad to be reaching such a big milestone.  I am looking forward to the months to come. 

Thursday, April 11, 2013

Darcy's Big Day of Testing

Today Darcy did her cognitive testing at the Behavioral Health Clinic here. Today was much less traumatic than Eva's was.  At Eva's we were told she had an IQ of 64, was on the level of a 3 year old, and had across the board severe delays.  Today we were told that Darcy had an IQ score of 77.  The doctor thinks her ADD issues are more from her anxiety and language issues than genuine ADD. I can see that. He thought she did really well for 6 months home. Like Eva, he didn't think this was a concrete score. With both the girls he felt there would be improvement after a year or two home.  For Eva he was unsure of how far she might be able to go. I was told by one of his colleagues that they felt Eva would possibly, maybe eventually score about an 80 on the IQ test if we worked really hard at it.  But that was the best we could hope for and it was a long shot. I think they underestimate her.  The doctor thinks Darcy will improve to low average over the years. I think they underestimate her as well.

Please know that I am not counting these tests as the holy grail and indisputable fact. And, really, so what?  Who cares what some IQ test says?  As always, a test result is not who they are. We do realize that. But these tests do give us a good starting place and a general idea of where we are and how we should move forward.  It is helpful, but it doesn't define them.

 The doctor was impressed by how much she seemed to know. He was surprised even.I didn't know what to say exactly when he told me that I was the first person he had met who did homeschooling well.  He said he had always been against it, but felt this was right where my kids needed to be. He said that whatever we are doing, we should keep doing.  So, that was the good stuff.

Again, this doctor mentioned RAD, which makes me crazy.  He said the same thing about Eva. Neither of my girl's exhibit the first sign of RAD. I think it is just an adoption buzz word he has heard so he throws it around as if all adopted children have it. Darcy does have some indiscriminate attachment issues, but they are nowhere near being classified as RAD.   He also has said repeatedly that Darcy has "FAS eyes."

 She doesn't.  She has Eastern European eyes.  She may have some FAE, considering what we know about her birth mother and her history. But, she doesn't have any outward sings at all. We know it is a possibility so we are aware and watch for signs without being paranoid or expecting to see them.

It kind of makes me take everything else he says with a grain of salt that he seems so clueless about those big things. I just think we are lacking in specialists that really get adoption and fetal alcohol syndrome. Which is why we are taking Eva to Emory in Atlanta to the FAS clinic later this month. But that is another post for later.


Basically, this wasn't nearly as shocking or traumatic as Eva's. We knew that Darcy was delayed (of course), but doing amazingly well for 6 months home. This doc, and everyone else has underestimated  Eva, so I don't put too much stock in these tests and the prognoses they bring for any of my children.

Darcy has showed amazing improvement in the last couple of weeks.  We pulled back on school and are focusing on Montessori type activities, bonding, and just talking to each other.  It is working. The last two weeks I have seen real, definable improvements. And it isn't just me noticing.  The kid's piano teacher mentioned it too!

So, there ya go.  That was Darcy's big day.  Good to know our baseline.  Can't wait to see how far we go from here.



P.S. update on Eva-we pulled her off the sleep med.  I think her behavior just goes in cycles, and we found that melatonin and chamomile work just as well.  Her poor liver is already on so many other pharmaceuticals that we want to keep them to a minimum if we can.  Her behavior is still so much improved from January.  She is in a good spot right now for the most part.  Her schooling is unreal. She has started reading, doing real math, handwriting, and science.  Essentially, she is actually in kindergarten now, and she is kicking it's butt! So proud!


Wednesday, March 13, 2013

Eva's 1st and 7th Birthday

Today Eva is 7 years old. It is also her first celebrated birthday. Can you imagine waiting 7 years to get a birthday cake? 7 years to hear someone sing "Happy Birthday" to you? 7 years to have people celebrate the simple fact that you were born? 

It is kind of hard to wrap your brain around.

I made my first cake/frosting from scratch. It has turned out delicious.  She is getting some Hello Kitty Legos which she has been begging for. But most importantly, she is just getting to revel in the fact that it is her day and she has a family that is thankful she was born.

No one should have to wait 7 years for a birthday to be celebrated, but lucky for us, we have many more to celebrate.

note-I never finished writing that, so I will finish now.  Eva had a wonderful birthday and a wonderful birthday party!  Hello Kitty everywhere!!

Just days later we celebrated her one year home.  Such a huge milestone.  The We were having a hard time in January and early February, but Eva has come around quite a bit lately.  I really can't believe it has been a year.

So glad to be where we are and for Eva to be doing as well as she is doing. I can't wait to see what the next year brings for our family and our 7 year old!

Anniversaries

One year ago today Dale and I boarded our first plane on our way to Ukraine to get Eva.  You can read about it here.  We had no idea what the year would hold.  We were still hoping that by some miracle we would bring both of our girls home in one trip.  We would not receive that miracle. But, we would see many others. Because today also marks 3 months home with Darcy.  They did not come home on the same trip, but they are both home now.  And, though it was hard, we can see the benefit in them both coming home separately. 

I am writing this blog not knowing if I will ever publish it.  Due to the awful trolls and anti adoption folks that have stalked us (do they have lives? Seems that they don't), we are currently not sharing our lives.  It makes me sad because so many people have loved us and cheered for us.  They have cried for us and laughed with us.

Really quickly I want to tell you some wonderful things that have happened. We took our kids out for dinner the other day.  All 8of us went out to our favorite Mexican restaurant, El Cazador.  Our kids were so well behaved. I was so proud of them. I know when people saw 6 kids come sit down by them, they were nervous, but they could not have been better. When we went to pay, they informed us that someone had already paid our tab. I could have cried. I don't know who or why, but the gesture was heartfelt and appreciated. 

That same day Seamus peed on the potty for the first time, which is a huge freaking deal! He yelled, "All aboard the potty train! Choo! Choo!" Man, I love that kid.

After the shiz hit the fan, I have never seen more people come together in such an amazing way. People showed up, people brought food, people came to help us organize and tidy up. People built our girl's triple bunk beds. For real. TRIPLE BUNK BEDS!!! I am so hesitant to live with our family out there cause bad people can do bad things. But, good people do good things too. I know the best people in the world. I am so lucky to know the people I do. I am beyond blessed.  My friends are truly the best people in the world and they blow me away over and over again. Grateful and thankful don't even begin to touch how we feel.

the past couple of weeks have been hard.  But they have also been amazing.  Someone tried to knock our family down, and all they did was give us another reminder of how blessed we are.

One year ago we got on a plane having no idea what was in store.  Today I look back with wonder, amazement, gratitude, and joy. The journey of 1000 miles begins with 1 step, right? I am so glad we took that first step.  And right now I am just enjoying every step we take. 

Thursday, January 10, 2013

Surgery done

I thought since so many of you have followed our journey that you would like to know that Darcy's surgery is done and she is doing well.  I am not coming back to start blogging again, but I just wanted to give you guys that update.  We are all very, very relieved to have this over with.  She will not be hurting anymore.  So thankful.











She is now resting on the couch and watching Anastasia.  I know from Eva's surgery that, though, she is good now, it might get worse before it gets better. But, since she didn't have her adenoids and tonsils out, it should not be quite as bad or as long of a recovery.  However, none of her rotten teeth could be saved, so having 9 teeth pulled out is pretty rough.  Thoughts and prayers appreciated.  We are very grateful to everyone who helped us make this happen.