Thursday, July 8, 2010

When does it hit you??

When does it hit you that you realize your child is mentally challenged?  I mean really mentally challenged.  It hit Warren and I the other day.  In the car.  Now, keep in mind, we have kids w/ varying degrees of mental abilities.  We know all or most are behind.  Many have caught up.  Alyona has not.  Sometimes, it is hard to watch.   The other kids understand she is different.  Though she is 11 years old, you have to treat her as if she is about 4 yo.  That gets hard some days.  The other day we were driving in the car.  I was driving the van, Warren was talking w/ Alyona.  Told her she has to wear the seatbelt.  We have recently taken her out of the 5 point booster and just put her in a seat booster as a carseat.  Told her she HAS to have the seatbelt on correctly there are no exceptions to this rule.  Asked her to repeat what we just said.  She couldn't.  Said it again and again as that is what you have to do w/ FAS kids.  however, this was more than that.  We then made her repeat word after word of what we said.  It literally took her 4 times to say it before it sunk in. It was something very, very simple. This was not hard.  Even the other kids were frustrated w/ it all. 

It was sad.  Sad to know that they'll always be the simple things in life that she really doesn't get.  Doesn't understand the way we do.  Alyona is 11yo.  She can not read.  Yes, she can do some sight words but not much more than that.  Alyona tries really hard so I can't say anything about that.  Just wish sometimes she could do more.  Not for me, but for her.  Because I know if she isn't able to do more, her chances of living independently are almost zero.  Yes, we basically knew this all along.  However, sometimes it just hits you like a brick wall.  I want her be able to dream big and know in my heart it can be done.  That her dreams can come true no matter what they are.  Right now, her biggest dream is to be the tooth fairy.  Seriously.  Alyona's siblings know she is different and doesn't know a whole lot.  I think watching her younger brother who is deaf and is naturally behind due to the deafness, pass her is incredibly hard.  Nik will be reading this year.  No doubt.  Alyona most likely will not be.  School says she can start to read but it is just sight words.  I've given her little simple books here to try to sound out and she can't do it.  She was trying so hard to read a book to one of the "littles" I watch but really could not.  She said mommy, that book is hard.  I nodded in agreement.  Complimented her on trying but deep down wishing so much for her that she could get it just once.  Just one time.  We've always treated her for the most part her age as her and Bojan are the same age.  They are years mentally apart.  The good thing I can say about her sibs is they do watch out for her and do make sure she is okay.  They help her a lot.  Whether it's telling her for the millionth time what is hot or cold or where something is. Do I want her to change?  No.  She is who she is and we love her for it.  It's just as she is getting older I'm realizing there will be many challenges in life for her.  You naturally want to protect your kids as they grow up.  No matter who they are.  I know things will naturally occur.  We have learned this from Irina in high school.  Irina is challenged as well but not as severe as Alyona.  It's hard as they grow and you watch peers who were once their friends not want to be around them as they  are so much younger mentally still.  See, when they're younger, they have friends.  As they age, it is more and more difficult.  Especially, for FAS children.  They don't quite fit in w/ the special needs category yet don't fit in with the regular kids either.  It is quite the balancing act.  We learned this with Irina and had to deal with it.  I'm being totally honest here so hope you don't mind.  Irina has always been a very, very social person.  Always had friends.  As she approached the teen years though, those friends diminished.  It is b/c they were growing socially & mentally & Irina was not.  The high school she is in now is horrible.  Just horrible.  They tote acceptance but it couldn't be further from the truth.  They are in inclusion classes (which I HATE) but that is for another post.  Since she is in a regular class, not getting a thing, if she asks a question, students around her make fun of her.  So, she never asks questions anymore.  I was hoping it would get better.  It didn't.  So, this year she will be homeschooled again.  Just wanted her to have a regular high school life and hang out w/ friends.  She does have one really good friend and then another friend as well.  Both are years younger than she is and that's okay.  But, I know they too will pass her and it will be a crushing blow.  I wonder how this will be for Alyona as she is even more effected.  I know I can't be there 100% of the time.  they are well-rounded and adjusted kids.  I just worry about all this. I want everything they want for their future.  I want to encourage their dreams but do you encourage the dreams that you know for a fact are out of reach?  I want to make sure I balance all of this.  Right now, Alyona is playing w/ one of the "littles" I watch.  She is 3 years old and they are having a great time together doing hair, playing baby dolls.  that's where she fits in.  And that's okay.  Just as she ages, I want to make sure there is a place for her to always fit in and just be a regular person enjoying what life has to offer.  Hope that all made sense.  I've never told my kids they couldn't do something.  Okay, not true.  They can't jump on the beds, they can't throw balls in the house, they can't go in the yard in their underwear(& yes neighbors, I know you've seen them out there like this--LOL).  But as far as saying they can't accomplish something due to their disabilities, I haven't said that.  I do believe that even children w/ mental challenges do need to figure some things out for themselves.  We've guided our children and hope we've done a good job.  I guess as they get older, I've been thinking about it more and more.  Alyona and Irina and very compassionate and sweet.  Will people take advantage of them later in life due to this?  I don't know.  I just know I can give them the tools to use and let them know we are always here to help if need be.  Always.  Irina is going to be 18yo this year and I guess that is why I'm thinking more and more about this stuff.  Though I know she is nowhere near ready to leave home, we've already been thinking how can we make a transition type apartment here to help her with that stuff.  Prepare her for later in life.  If anyone who has been through this with their children, could you share some secrets with me.  What helped them the most?  What would you have done differently?  This is not a vent or to complain or any of that stuff.  This is a tell it like it is.  That sometimes I do get nervous of the unknown of what happens to children w/ disabilities that become adults w/ disabilities?  Share any insights you may have.  Any mistakes that I may be making.  I want to learn.  I know for a fact most of my kids will be able to live independently.  however, most will indeed need supervision along w/ that independence.  We're okay with that.  We just wan to make sure they'll be okay as well.  Thanks for listening to me babble.  Any suggestions, please let me know.  They are doing fantastic right now, I just want to make sure that continues into adulthood.  I know there will be bumps. There are in everyone's life. 

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