Monday, October 17, 2011

How far will she go

This is a hard post to write.  It is about Alyona.  Alyona is mentally challenged.  Funny thing is, I never have really thought of her that way until recently.  It just didn't occur to me.  To me, she was just Alyona.  Just needed time to catch up.  She could do it.  Alyona came to us at 7 years old.  She weighed a little over 20 lbs.  Wore size 3T's I believe.  Shoot, took us forever to get out of the toddler size.  Alyona is from Russia.  She has FAS(fetal alcohol syndrome).  I knew this going into the adoption.  It was not a surprise nor were the list of other dx's.  Yet, I saw that she had a mind and she could grow.  Well, maybe not so much physically.  LOL.  She'll always be little.  We started her in kindergarten when she came home despite her age.  Knew that was the right placement.

Alyona is now in 5th grade. We pulled her from school this year to homeschool her.  We could see the frustration in her clearly last year.  In addition, she was not learning.  I do NOT blame the teacher.  She had an excellent teacher.  I liked her a lot.  However, her hands are tied by laws that make no sense to me any more.  Under the law, even in special ed, they must teach on grade level.  Just modify the curriculum.  Yeh, that's not going to work.  You can't teach a kid division and multiplication if they can't add single digits w/out making a mistake.  In school, everything is modified for Alyona.  There is no way for her to learn that way.  None.  That is why we pulled her from school.  Yes, she was making A's but on what?

I have Alyona now working out of kindergarten books and she is struggling greatly.  I mean really struggling.  I've even moved her back to preschool stuff for some of it.  Adding single digits is still a struggle for her.  She has trouble retaining anything.  Which is part of processing issues w/ FAS.  That I know.  However, it is hard to watch day after day.  She is 12 years old now and desires to read so badly.  She picks up books and pretends to read.  Gets mad if I work with her.  We are thinking of going back to phonics and teaching her and Nik on the same level at this point.  Not sure.  Need input from others.  If you've been down this road, please share some advice that may help her.

It is so hard to know your child may never be able to learn more than she already has.  She may never be able to read.  She can read simple sentences such as The cat is blue.  But other than that, nothing.  I want her to learn.  I think it is important for growth.  She's due to have her eyes checked again.  That is a huge problem for her.  They used large print at school but then ophthalmologist changed her script & that helped.  He said she doesn't need large script now.  With her disorder, optic nerve hypoplasia, it is not supposed to change much.  Hers changed a lot last year.  Yet, she never told us she was having trouble seeing.  Even after asking her.  We go to her eye doc like clock work every year.  So, we weren't concerned.  Even though fixing her glasses did not fix her academic problem.  You see her working and trying so hard.

She is concentrating so hard here to try to get the glue on the acorn tops.  We show her everything first.  You explain something, she will not understand it.  Ignore the pj's.  Sometimes we just start on homeschool right away & forget we are not dressed yet.  Oh well.  I gave them popcorn containers to go collect acorns in the yard.  They are decorating frames to put their pumpkin patch pics in.  But this picture above shows just how much Alyona has to concentrate to get things just right.  


I know you can't tell from the picture but Alyona is not nearly half way done and she had been working on it way longer than Nik.  Even the little tasks are hard for her.  Part of that though was due to her radial articulation & botched surgery job a few years ago.  Her arm hasn't worked the same since.  Part of it though is just how her brain learns.


This is Alex's finished frame.  He cheated & spaced them out so he wouldn't have to do it as long.  Actually, quite clever when you think about it. 

I guess the point of this whole post is to show you that she has to struggle so, so much harder than everyone else.  Over the years, it has not gotten easier for her but much more difficult.  As a parent, this is hard to watch your child struggle and know deep down no matter how much you tell them to try, you know in your heart they will never understand  what they are trying to learn.  It rips my heart out to watch.  I do know she's better here than in school.  But I also know she will never ever catch up.  I was hoping maybe she could at least make it to a 4th grade level in life.  The professional word is if you can make it to a 4th grade reading level, you can live on your own.  At this point, she is on basically a kindergarten level/ beginning 1st grade level.  We know for a fact, she will never live on her own.  Simple tasks are difficult for her.  I guess some times it is hard for me to admit or consider her as having a disability.  I've always just seen her as my little girl.  Alyona.  She desires to be like other kids.  She has not realized yet just how different she is.  That will hit her a few years out.  It hit Irina last year at age 17.  I don't know how old Alyona will be.  Alyona is quite further behind than Irina.  Now, I don't want you all to think Alyona can't do anything.  That is far from true.  

Alyona has learned to do a lot recently that she is proud of.  Very proud of.  She can make her own oatmeal and toast.  She can make tea for the whole family!  She even noticed when the tea was way too sweet, that Yana was using a whole cup instead of two-thirds.  She said to me that is way too much, that is wrong.  Amazing for her to be able to recognize that.  Those are the times I see those glimmer of hopes.  She loves to help clean up.  She is learning how to cook with me.  Laundry is hard b/c she can't reach all the controls.  She's getting there though for sure.  So, Alyona is indeed learning.  At her own pace.  I don't plan on rushing her & can only push so far.  I'm not sure how much more new info Alyona will be capable of retaining.  All I know, is I will continue to teach her to the best of her abilities.  I just need tips on things that may be able to help her.  With so many challenges, I want her to be able to reach her fullest potential. As a parent of children with disabilities, I never focus on the disability itself, but rather the child.  I've done this w/ all my kids thus far.  But, there reaches a point when you realized you've probably maximized that potential for learning.  When you reach this point, you then have to realize where are they headed in life & what can I do to best prepare them for that.  For Alyona, we may have to go more into life skills versus more into academics.  I don't know yet.  I just know I don't feel like giving up.  For Irina, I had the head of special ed tell me she'd never pass a second grade level before she even entered school to learn!  She has well surpassed that dire prediction.  For Alyona, it is the same type of thing.  I want her to go as far as she can go.  Right now though, I'm feeling we won't get much further than we are now & I guess that may be scaring me to a point.  If anyone has any ideas, please do share.  We love Alyona immensely.  We know she is different.  And that is perfectly fine with us.  We just want to do what is in her best interest as far as learning goes.  Do I even bother w/ the academics I know full well she will never be able to grasp?  Do I try it?  Will it frustrate her even further?  More unknowns.  For now, we are continuing to go the direction we were originally headed with her...academically.  I may switch that to more life skills soon, but not quite ready to do so.  How do you know?  Please share some of your secrets that have helped you to make that decision in regards to academics.

4 comments:

  1. I read an adoption blog where the mother is homeschooling their 5 children. One was having a lot of problems learning to read in school. He is doing so much better now than he is home, learning at his own speed. That blog is Lajoy Family. Maybe she can give you some ideas.
    I like reading your blog and pray that all will be fine with teh 3 new additions.
    Fran S.

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  2. Hi Stephanie ~ You know, of all of your children, Alyona just has the most special place in my heart! She has a preciousness about her that I can't quite explain. You have said that she wants to read, many many times, so NO, don't stop trying. I believe that she needs to keep trying. Don't set big goals, just tiny ones. And, Celebrate every tiny victory! I would make some flash cards with basic words. Laminate them, because she will use them a lot! Let her be creative and decorate them. And, when the 3 Newbies come home, allow her to teach THEM! She'll feel so good about herself! My heart and I believe God, are telling me that your sweet girl is gonna blow you away in terms of her abilities! Do you know how much I wish that I lived near you?! I would be there all the time! I'd be there to help you with the kids, teaching them and reading to/with them. And, just loving them. I'll be honest...your blog is always the 1st blog I read every day! I love to read about each of your kids and hearing what they have succeeded in! Yep, they all have their trials, but they are good, loving kids! I was a Pediatric nurse for man years, until a bad car accident took that away. I couldn't stand for 8-12 hour shifts. But, you NEVER lose the knowledge! I worked in a residential school for kids with behavior problems/mental health issues for 2 years and I LOVED it! I also did some Psych nursing. Once I stopped doing Nursing, I became a Nanny. I did live-in and live-out. All ages. I knew that my life had to focus on children. And, I'll tell you, if you ever decide you need an "Auntie", to be their to help you with your kids, I would be willing to talk about it! I am so serious. I am living with my 2 cats in MN., and my life is not what I want. I may have to use a wheelchair, but it doesn't stop me from doing anything! Okay! I can't walk, but there's not much else I can't do. I can love! I can sing a song or wash dishes or bake cookies. So, keep this in mind. And, know that I don't make this type of offer to just anyone! NOW, to just get those three babies Home where they belong!! : )

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  3. I had someone else email me (Dee from over at Crab Chronicals) about Alyona and I come here and see Fran's comment as well about us! Email me anytime at CyndiLJ@aol.com . We do not battle FAS but have 5 adopted from Kaz and Kyrg, and are homeschooling them all...one was 12 and read 20 words per minute and struggles with other issues, but we are seeing success. I know your frustration, we don't have FAS but institutionalized kids can be a complete mess academically. If I can help, please write and we can chat.

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  4. Your daughter reminds me so much of my niece, adopted at age 4 from Romania. Your daughter can learn, and she will learn. She will just be at her own unique pace. So many times I underestimated my niece, thinking she would never be able to do something, but every time she outsmarted me and proved me wrong. I think the hardest part is just acknowledging that her normal is not the same as the average normal. So hard to look at a 17 yr old and have to remind yourself that physically she is 17, but mentally she is 8 yrs old. The best thing you could do for your daughter is homeschool her. My sister has refused to do that and my niece has suffered year after year. If she had Down syndrome or a visible disability it would be different, there would be a constant reminder. But because they look "normal", it is so hard to shake the belief that they are not "normal". If they had Down Syndrome you would easily celebrate every time milestone, but with something like FAS it is so hard to not keep remembering that "she could have been normal, if she hadn't been damaged in utero." She had her normal stolen, and that is hard to let go of.

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