Thursday, February 18, 2016

The Dark Cloud

Well, it's been a while.

Elena knows (and approves) everything I write here, so I've thought long and hard about what I should post.

The reality is, I'm having a rough time.

Rather than go into detail about every mundane thing, I'll wrap it up like this. We spend a lot of time trying to teach Elena concepts, skills, self-care, etc. We give her opportunities, and try to help her make some of her own. But...they don't stick. She's like...a sieve.

Math concepts we worked on, and scored well on, vanish. She repeats everyday tasks four times because she didn't pay attention to get it done the first time--or second, or third, even when she's in a good mood and has no outside distractions. She doesn't seem to care that her actions (or lack thereof) hurt other people. Her idea of problem solving is nearly nonexistent.

She's had at least two new assessments (OT, which I should probably elaborate on in another post) and they have been helpful. Right now we don't have time for any new appointments (extra therapy, tutoring, sports, or other enrichment) b/c she has Drama club 3x/week (not all rosy there, either, as her involvement with the play and her castmates is lacking) and fitting homework and home life is time-consuming enough.

I wouldn't say these observations are new. I would say I am extremely discouraged that they have persisted so long, with very little improvement.

6 comments:

Anonymous said...

Just sending a hug! Life with complex kiddos is so tough! My littlest kiddo has quad CP... But the complexity of Aspergers in our 11yo and learning disabilities (and its impact on life too!) in our 9 yo are actually more challenging.

I appreciate all you share and I have gleaned a ton from your blog. Just wanted to let you know you and Elena are in my thoughts. This age is hard for kiddos who are not 'cookie cutter kids'. Life gets incredibly complex so quickly...

Jenna
Momm to 6
Ages 20-7

Anonymous said...

Hi Amy,
I tried to leave a nice comment to you last night but I must have deleted it or something. My bad. I have spastic diplegia CP like Elena and I still have trouble with math in college. Like Elena math became hard for me to understand around age 8 to 10. I can understand math when someone is in front of me explaining it but have trouble repeating the steps I learned on my own like as if my brain never downloaded it LOL. Now that I’m in college I have improved somewhat because I have to use math in adult life. However last semester I failed a math final. It was one of the most humiliating moments of my life. I LOVED my math teacher to death and I did not want him to see me fail after I had worked SO DAMN HARD to study for that exam. I wanted my math teacher to be proud of me. I felt like crawling under a rock when I failed. Luckily my teacher knew how hard I tried and that I really did pay attention in his class and we are now friends. I have been told by physical therapists and docs and school staff that my math difficulty has to do with abnormal motor movements of my eyes making it hard for me to follow the steps of an equation because my eyes do not track properly. Since my eyes do not track properly I am incapable of filling out “bubble in” exams i.e scantron exams. I was also told that because I have spastic diplegia my proprioception and spacial orientation is very bad and therefore my brain sees number values like when reducing fractions differently than an able bodied person does. I think this might have to do with the left side of the brain controlling both math and balance and the left side of my brain might be more damaged than the right because the right side of my body is more spastic. The left side of the brain controls the right side of the body and vice versa. I know somebody with hemiplegia brain damage who has bad balance and abnormal eye movement so he gets dizzy and has trouble with averages after the brain injury. The things that have helped me most in math are having a teacher who explains math in a way where it is related to something REAL like when my friend who is diabetic told me they use math everyday to stay alive or when math is related to something I enjoy so my brain sees the PURPOSE of the math. I also have a scribe and permission to use a calculator to compensate for what my eyes cannot do in math. Could having accomadations be a possibility for Elena??? As to the other stuff I know you said Elena has “a non verbal learning disability” so I imagine that accounts for the other skill difficulties as well as part or all of the math difficulties. Indeed learning disabilities are much harder to deal with than physical ones especially for the caretaker because you do not want to see the person struggle. The thing is brain related problems take time and a lot of patience to improve. I have friends with learning disabilities who just have huge gaps in their emotional or academic functions. Most of the time they do not see the consequences of their actions and these actions are not done purposefully. Elena is likely not being purposefully lazy. Her brain just has a “block”. I will say that for me personally I tend to do a skill better out of having to do it to get something I want instead of having a parent or teacher telling me to do the thing over and over while hovering over me. I have to learn and see things for myself instead of being told something. I also want to say I am very glad you ask Elena’s permission. It is wonderful to see you post here again! Please post again soon about the assessments!

Tonia said...

Hi Amy,

I'm not a regular reader, I just got referred here by a friend (who also has CP - I do, too). I wanted you to know that math concepts ARE really hard for me, too. Even basic ones. I understood things like basic adding and basic multiplication. Concepts like subtraction and division, fractions, and anything spatial like algebra and geometry were very difficult. In high school Intermediate Algebra II, I would have failed, had it not been for a retake option. I studied hard, but it seemed like I needed to see the information twice before it clicked in my brain - I ended up able to pass with somewhere around a B.

I don't know much about your daughter, this is the only post I've read, but what you said about her not feeling bad if she hurt someone's feelings made me wonder how things are socially for her? You don't have to answer, obviously it's her business. I just wonder if maybe she's dealing with isolation or difficulty making friends? (I struggled there, too.)

I did a recent interview, and I wonder if it would help you, as I talked about growing up with Cerebral Palsy. I'll leave it here, in case you want to check it out. http://www.ellenstumbo.com/a-video-interview-on-growing-up-with-a-disability/

Anonymous said...

My college professor who also has a disability said some people with brain damage like CP have a memory issue with math and other types of tasks. The brain takes it in but will not retain it. He has had many students like this and said most do well with slight modifications to how, and how often the material is presented.

Anonymous said...

I just learned from a new friend and math teacher who has diabetic retinopathy that screen readers can read math problems and you don’t have to technically be blind to get the software as a testing accommodation. Even I can get an accommodation like this for math testing in schools for Cerebral Palsy related eye movement issues if needed. The software he mentioned was for windows 7 but there may be versions for mac. I have a feeling blind people with screen readers already know screen readers are capable of these tasks but it was definitely news to me! My math teacher thought I might get eye fatigue doing math because I have had math issues since I was Elena's age and have involuntary eye movements due to CP. Is it possible Elena has trouble seeing the math and does not know it? I was unaware of how CP effects my eyes until I was a teen and realized I needed test accommodations. Please look into some kind of math screen reader for Elena!

Margot said...

Hi Amy, I just got 85/100 on a math final for the first time in my life! I was just like Elena with math, I'v had trouble with it since 3rd grade and always just barely passed. I had extra time and a calculator as accommodations and studied twice as hard as my classmates and tada! Finally a decent math grade! Try online math videos like "Math Antics" on youtube! It totally saved my butt!