Saturday, April 16, 2011

pod people & painful world (FAS)

Weird title to be sure.  However, you'll understand once I explain.  The latter is a serious topic.  Pod people though, not serious.  This morning, my kids (yes, MY kids), actually got up on their own, ate, made their lunches, AND even cleaned up the whole house!  I was stunned.  No yelling, no waking the dead, no screaming the bus is here, none of that.  It was literally peaceful.  Completely peaceful.  I said when they got home do you think we can do that everyday?  I said it was so much more pleasant.  They agreed.  Now, whether this anomaly will ever happen again has yet to be seen.  But I was beyond estatic this morning.  Even got to do a little weightlifting and stretching, followed by a cup of tea.  Just such a nice change of pace around here in the mornings.  See, typically, Alex will have to be woken up at least 5 times.  No one can find anything despite it being laied out the night before. They want me to sign things the last minute.  I refuse as they know this is a big no no here.  You get the picture.  Chaos Manor lives up to its name in the mornings.  So, having it all normal, was wonderful.  Nice change.  So, as you can see, the pod people visited us.  I so want them to come back.  They even remembered to feed the dog!  Please let this happen at least once more.  I'll let you know but not holding my breath.

Onto the more serious issue around here.  Irina has reached a point this year where she recognizes the implications of her disability of FAS.  I wrote about this some time ago so won't re-hash everything.  Just know, she's having a tough go of it.  Her sister is NOT helping matters any.  Not one single bit.  It is no secret Irina has gained a lot of weight in the last few months.  This is all due to the stress of school.  Even doctor has said that.  See, they put her in an inclusion class as they do everyone in high school.  I will indeed be having a post on that soon.  It's horrible, horrible, horrible for these kids.  They get made fun of, they don't have any friends b/c they don't fit in, they get singled out by the regular ed kids and the list goes on.  If you all are wondering why we haven't pulled her out to homeschool her yet, there are a few factors.  First being, we have something hanging over our heads since February.  Still can't disclose it but it is a factor in all this not being able to homeschool her yet.  We also want to get Irina a little more stable medication wise.  We had a recent visit w/ her doc and though we didn't adjust anything, another ENT added quite a bit more.  And even normal meds that folks would add & think nothing of it, does have an effect on some of my kids w/ their reactions to their other meds.  Not sure if that made sense or not.  Recently, Irina's OCD has gone a little haywire.


Now, most of you wouldn't think this is a big deal.  There was nothing wrong w/ the cabinet before.  It just wasn't organized enough for her.  This type of stuff happens if she forgets to take her medicine.  She also scrubbed the refrigerators out the other day.  She focuses on the kitchen all the time.  Not sure why.  Her room looks as though a minimalist lives there.  It's hard to watch at times.  She'll get new clothes with the tags on them and won't wear them.  Why?  Because she is afraid she'll get them dirty. Yes, we do have a washing machine but with someone who has OCD, the rational part of things does not come into play. She does have issues with her OCD.  It's not as serious as some folks w/ this disorder but it's not nothing either.  It's the reason she had to have her own room.  It's the reason we couldn't allow her upstairs this past week while we were renovating the rooms upstairs.  The paint alone was driving her crazy b/c the kids would spill it on the floor.  We had to move everything to one room.  So, our rooms upstairs looked like this:


Alyona's area while we were painting Alyona, 'R', and Summer's new room.  To Irina, this was filthy dirty b/c mattresses were loaded up on top of one another.  Her fear of dirt is hard to take at times.  God knows we all suffered her wrath when the bird flu epidemic happened.  We had to finally take the lysol away and cleaning products.


The hallway upstairs while we were cleaning & working on the room.  Irina couldn't stand it.  She told us we could better organize it.  Umm, no.  There is no place to put it.  It's a temporary thing but in a person with OCD, this is an issue.  She wants things in their place ALL the time though when you have a major project to do, this isn't possible.  



This is the boys' room.  We had to move it all into the front bedroom.  Our next step is sorting, getting rid of things and consolidating.  It's a process and takes time.  Irina can not be part of it.  When she is, she wants to immediately throw everything away.  We have had VERY important documents thrown away b/c they were left on the kitchen counter, where we leave all our docs till they are filed.  Yes, OCD can affect the entire way of life around here.  We deal with it. 

That was only part of why we haven't pulled her from school.  Like I said before, it is so hard w/ FAS kids being "stuck in the middle."  Don't fit in with the "normal" population nor the special ed population.  Makes it so hard on them.  This is why we feel it is vital for them to meet others like them.  There is a local support group but it's not the closest thing for us to go to.  They meet once a month.  Irina had a really great time the time she went.  Met another girl she enjoyed spending time with.  There is an FAS Camp in October.  It's in Florida.  We really desperately want to go for the kids to connect to others.  We're trying to find a way to make it work somehow.  Unfortunately nowadays, everything takes money, including a trip to FL.  I can only imagine what gas will cost in October.  With a pending adoption, we are limited in what we can do.  Yet, we feel this is really going to become vital for Irina.  She feels like she's the only one.  I need her to know she's not.  And no, just telling her doesn't help.  You know kids. 

What happens with Irina and a good majority of FAS kids from what I've observed, is they reach a certain point in a friendship and the friends "outgrow" them.  See, we've been told & seen the research that FAS children tend to be around roughly half their chronological age in the social and mental area.  And typically, these kids are all over the map.  Some things they are age appropriate on, somethings not.  Sometimes they act quite immature.  So as you can imagine, it is hard to maintain a friendship while the friend is maturing & the FAS child is not quite there yet.  Irina had many friends throughout elementary, middle school.  However, when high school hit, those friends fizzled.  The one friend she had left this year to another state.  That is when Irina realized she really didn't have anyone.  She is a great girl, just does some things that are a bit different.  And in high school, that's hard.  She's also having a hard time dealing with issues in her high school.  Trust me, it's not the best school around here.  Not by a long shot.  It's hard for her to be around all the fights that occur in that school.  Hard for her to be around the drugs.  Hard for her to be around the sexual nature of teens at that age.  She had one girl try to lick her!  Yes, I did get on the school's case about that one.  Too many people she sees are pregnant yet vice principal said that wasn't a big deal in the school.  What?!  How can someone in charge not think that is an issue in high school?  I guess b/c there are so many fatalities at that school for driving.  Maybe the pregnancy part seems insignificant.  Don't know.  Just know she is very confused.  WE've spoken to her about many of the issues and she has confided in us a bunch of how she feels.  She said she doesn't want a baby and asked if waiting till she was 27 was too late.  I said not at all.  That's a perfect age hon.  For someone with FAS who is also mentally challenged, these real issues in high school are hard for her to wrap her mind around. 

Irina can hardly wait for the new kids to come home.  I know it will actually help her.  She loves helping and feeling needed.  Who doesn't?  But this will be different.  She has already said she'll help teach them and show them things.  I think it will truly boost her self-confidence.  I'm also going to get her back into helping me cook more.  She used to love doing that.  We are also doing more family activities.  Irina is very happy we're going to Deaf Camp this year.  I mean really, really happy.  She is also helping me think of trips we can take to learn some things.  I've also asked her to help w/ what she wants to learn this year.  We're going out job hunting this coming week for Irina.  Again, something she'll be limited in as she can not do much with money or anything that requires memory (waitressing). 

As a parent, I'm trying to find a balance with helping her and yet letting her discover things on her own.  Tough place to be in...in the middle.  Another issue we have is the county we live in is horrible for adult services or any transition services.  I was told a few years ago by mental health to leave the county if we want to have a chance with our children.  They said there is nothing here & we have multiple kids w/ challenges.  Yet, now the economy is such that you really have a tough time selling a home.  Not only that, heard from several surrounding counties that it's not much better there either.  So what do you do?  We've been researching trying to find solutions.  Nothing has come up as of yet.  We want what is best for Irina and for her to reach her fullest potential.  I know she is able to do a lot on her own.  Yet, in many areas, she still needs help.  Warren and I are always there for her.  Always have been and always will be.  I just want her to enjoy the last 2 years of high school. 

We are learning as we go with Irina.  She is our first child with FAS.  This is a new area for us in parenting...the late teen years.  If anyone has suggestions, please send them our way.  I have learned a lot over the years of how to handle things that come up during the elementary years and middle school years.  But this is new for us and we're learning to navigate it.  You are taking someone who constantly needs an "external brain" to think for them and trying to teach them to think for themselves and help themselves.  we've explained to her that everyone has rough spots in life.  Everyone.  Don't care who you are.  It's how you handle those rough spots that makes a difference.  I take comfort in the fact that she is able to communicate with us, she does still live at home, she is trying really hard to take our advice (not all the time, she is still a teen you know), and she has a wonderful heart. 

Sorry this was such a long post.  Just know that others have felt the same way at times with their older FAS children.  What makes it difficult is that every single child with FAS is different.  We have to teach them things in life a bit differently but the main thing here is that they can indeed be taught.  I was told years ago by the head of special education(who just retired this year) that Irina would never pass a second grade level.  I was told many, many horrifying things back then.  Point is, I chose not to believe them.  I took them with a grain of salt.  I wanted my daughter to reach her fullest potential.  She has gone further than anyone predicted.  Yes, we did things a little unconventional for quite some time.  We treated her like everyone else.  No special therapies.  Though we did do a quick stent of pyschological counseling when her & Max first came home.  Everything else, we tackled on our own.  I do think she is better for it.  I was never out trying to find the latest and greatest thing to help her.  I was letting her experience life.  Do activities such as gymnastics, cheerleading, soccer, trips, etc.  Subtly teaching as we went along.  I guess I'm writing to tell and to vent at the same time. I'm frustrated I don't have the answers.  I know that's okay.  I do know.  I've spoken to many parents over the years regarding special needs children.  I know a lot of us second guess whether we've done this right or that right.  Should we have gotten that therapy or this therapy.  I mean all kinds of questions we ask ourselves.   Bottom line is we question ourselves b/c we want the best for our kids.  Irina will become a productive member of society.  I have absolutely no doubt whatsoever about that.  For now though, I must help her get through the last two years of high school. 

Need to go.  I could go on forever.  Keep in mind, these are opinions based on MY kids & MY experiences.  Yours may vary.  They vary b/c every kid w/ FAS/FAE is different.  I have 6 with this disorder and can tell you without a doubt each is different in how the disorder effects them.  I welcome suggestions.  We love our kids and want to help them in any way we can.  Maybe some of you have ideas in the friend area.  Mean time, she is having a fun evening w/ family downstairs.  She was discussing earlier what kind of job she wants.  So, she is looking to the future.  That is always, always a wonderful thing when it comes to a teenager.  Have a wonderful weekend.  BTW, we survived the storms here. 


3 comments:

  1. I have 2 kids with FAS, one 10 the other 35 yrs. I will tell you school is hell if they are mainstreamed. Our 35 yr old suffered horribly when mainsteaming started. He was 14, we had to increase medications. Our state- MN would not allow him to go to Homeschool back then :o( So we knew we would never enroll our 10 yr old in public school and she is doing much better emotionally. No medications. But social challenges are a huge part of her learning. Like how not to tell every person you meet your entire life story! LOL! My heart breaks for Irina. (((HUGS)))

    ReplyDelete
  2. I also have 2 with FAS, one 25, the other 8. With my oldest daughter we went the mainstream route, with minimal labels. She is not capable of surviving on her own and it is hard to get her services at this point. As soon as the little one turned eight, we qualified her (in NY) for Developmentally Delayed Services for life. It is much easier to do before they are 18. {{{Hugs}}}

    ReplyDelete
  3. Ithink this is among the most vital information for me.
    And i am glad reading your article. But should remark on some general things, The
    site style is ideal, the articles iss really excellent : D.
    Good job, cheers

    Here is mmy web blog: lacey schwimmer ()

    ReplyDelete