Monday, December 9, 2013

What's Really Going On

Several months ago, BoyTwo was officially diagnosed with FAS.  Although I already knew that this was most likely what he was dealing with, I felt like I had been slapped in the face when I was told.  I was surprised at how sad I felt for him.  I know that he will continue to progress, at his own rate, I know that people with FAS can be successful, I know all of that.  I'm also aware of a lot of the statistics associated with FAS and those remain my concerns.  I'm scared for him.  It's tricky, you see.  BoyTwo is likely going to need assistance forever.  This may be in the form of someone helping him budget, grocery shopping with or for him, someone living with him.  He's going to need somebody to be his exterior brain.  This person will largely be responsible for helping him with his executive functioning (or lack there of).  He will need to be able to trust someone enough to rely on them.  Which gives us our next hurdle: teaching someone with attachment difficulties to trust.  The irony of it all.  It's just one giant circle of FAS causing other difficulties in his life. 

I was mad at his bio mom for a minute.  And then I just felt sad for her, too.  

This school year is going well for him.  He is in special ed/resource/whatever the current politically correct terminology for that class is at the moment for half of his day.  During the other half, he has pull outs for reading and his own personal aide comes in with him to do his work.  His behavior has come a long way.  His teacher has been great to work with and works so well with him.  I did my usual 'BoyTwo Training' for all those who would be working with him at the beginning of the year and that seems to have really helped.  

It's hard to watch the already large gap between him and his peers continue to widen.  I see little spurts of growth from time to time where something will click and that gives us all hope:)  My heart hurts for him because his peers are also getting old enough to see how different he is and while they are still very kind to him and extremely tolerant of his behaviors, this year there is a much different feeling between them all.  He doesn't really notice that he doesn't have any friends or that he is so different than others and I guess I'm grateful for that.  He does have one little friend.  Our neighbor who is four years his junior.  

I continue to spend much of my time at the school.  I started an art program and that has been really fun for me to do.  I  do a lesson for half the school one week and the other half of the school gets it the next week. We are learning about master artists, composers and authors.  I love introducing the students to these fascinating people, many of whom struggled with identity, learning disabilities and misfortune of their own.  I love the life lesson it provides to persevere, have faith in one's self, and to not be afraid to try.  I also come up with an art project to go along with each lesson and that has been... a huge learning curve.  I'm not at all artistic and as a child I hated art during school.  It caused me enormous stress to not be able to perfectly recreate the assigned project and to not be able to make my hands produce what my mind was envisioning.  One of my first lessons this year was about Picasso who has said that you cannot create a masterpiece without first making a mistake (or something along those lines.  I don't want to look up the actual quote).  I encourage the kids to not erase, but to make each seeming mistake into a work of art, to add interest to the piece and beauty and originality.  See how it's so much like real life?  

This semester I have homeschooled One part-time.  She comes home every day after lunch.  I have loved this time with her while she still likes me and thinks I know something:)  I love that we can personalize her curriculum and have one on one time together that we otherwise would not have.

Four has taken to reading like a whiz and this mama is so so so grateful.  After having four of my other kids with reading/learning disabilities, it is a blessing to see her take joy in reading and learning and to not struggle with it.  I love when she comes to me with a book in her hand and asks me to listen to her read.  It is the highlight of my day!

BoyOne is a sophomore in high school this year.  In our state this means it is also his first year at high school.  (Don't ask, I have no idea.  I didn't grow up here and I think it is so weird.  You're a freshman in high school but you don't actually go to high school.  Makes a ton of sense.)  Without getting to personal, it's not really working out for him for a lot of reasons.  As his parents, we are needing to adjust what our goals for his education are.  What was once a priority is not a realistic option without sacrificing an actual education.  We are in the process of making decisions that will be agreeable to both him and us.  I feel the added pressure of lack of time with him.  He turned 16 in September.  Shortly after his birthday he approached me and asked me where I thought he would be if he was still in Ukraine.  Then he told me about how different his life would have been had he remained.  It was good for me to hear because I've been feeling like the progress here has not been quite what I had hoped for and that perhaps we had failed him.    

Two and Three are doing well.  School is a challenge for them both and that weighs heavily on my mind constantly.  They work so hard at everything they do.  As I often tell them, they will be blessed by learning to work hard.

I am so grateful that I am their mother and that I get to be the one to journey through this life with them.  I'm immensely grateful that I have the opportunity to be a stay at home mom ( although whoever thought to call it that was smoking crack because what stay at home mom is actually ever home?!).  This gives me the opportunity to be ever present and available to them when they need help.  One of my biggest concerns this past year or so has been the lack of time I have with my kids before they leave my home.  I have tried to spend more time talking with them about eternal things, incorporating more heaven into our house than ever before.  I'm not magically more patient, we aren't magically getting along at all times and my kids haven't magically turned into scriptorians, but at the end of the day there is a feeling of love and peace that abides in our home.  Right now that is my number one goal.

4 comments:

  1. every time I read your post I am so impressed. You are doing such a great job being a Mom. And I love that you are teaching art!!!

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  2. I'm so glad you posted. I've been thinking about you.

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  3. Oh Stephanie, you're so awesome! It hurts my heart to read about the widening gap you talked about betw/ Boy 2 and his peers. As a mom, that has got to be hard to see! Still, you have literally saved both of their lives...and it is inspiring what you're doing. I miss you!!

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  4. Oh Steph! I am just getting to your blog. Crazy Christmas. I too am so sad for Boy 2 and Boy 1? Sounds like it's a little rough on that front too? I know what you mean about lack of time. At one point (early on) when Alex was driving me crazy I was counting down the days until he was out of here - now I'm dreading it. He still has so much to learn and we have so little time to have him in our home. My third child leaves for school in the fall and I'll have two at home - that seems so bizarre.
    Wish we could catch up more! If you're ever in town - let's get lunch!

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