From Sophia

 

Hi!I am Jacobs big sister Sophia and I would like to talk about Jacob. My favorite thing about Jacob is that he is funny and has a very big imagination. One time he asked me to play Diversity. I asked him what that was and he said it was a Minecraft game, but he wanted to play it in real life. I thought that was very funny.
   Another thing I like about Jacob is that he knows stuff that we don't know.  Just the other day he was talking about atoms, protons, and antimatter. Then he said something about strange matter and we didn't think it was a real thing until we looked it up and the definition was the same thing Jacob had said to us.
  I love Jacob so much. I think that even though he has autism he is no different than any other kid.

Leaps and Bounds

We are moving in leaps and bounds! He definitely caught me off guard this week  with his educational plan. It
has me second guessing what material we should be working on. I am proud to say that I have moved him to second grade but in a more restrained manner. He is actually in 3 grade math and now fourth grade reading.  I am trying my best to get through skills that he hasn't done so he doesn't have too many splinter skills. His pace is months ahead of where I thought we should be and at this rate we will be in third grade by January for english skills. Just the other day I checked in his math program and the little stinker is moving up to fourth grade math! Sometimes I just have to take in the awes of Autism. These moments when I see the bright little man we have make up for all the days we struggle just to get our shoes on or even get that shower done in the morning!

The Cooper-Eager Observation

    We have stumbled upon the television series The Big Bang Theory. I have so much to say about Sheldon and now why I am now sucked into watching it.  I'm not one for watching shows that deal with what is going on with our family. I like the idea of escape and started to watch it this year just because I heard it was good. I had no idea I would get hooked on watching The Big Bang Theory and seeing so many similarities between Sheldon and Jacob. I know the writers say Sheldon doesn't have aspergers. I have read the articles and don't care if he is labeled that or not. What I do care about is how he is portrayed and how the other characters treat him. He doesn't need a label to see his struggles socially and what others find as his quirks are what I see as a combination of asperger like qualities. This page explains many and even talks about them in context of the show.(http://gypsumgirl.hubpages.com/hub/Sheldon-Cooper-PDs)
    What I love about the show is how even with all his personality quirks his friends try to understand him and in many ways try to help him with social issues he struggles with.  There are times where they are super frustrated in what he has said or done and try to explain to him what he has done is not acceptable behavior. It in a way gives me hope of people excepting Jacob and all his quirks. This week I have watched Jacobs manners around others and see that he struggles understanding them.  Also Jacob's way to start a conversion has changed from "excuse me" to "I want to say something".  He seems more patient in waiting to take turns and excepting no.
       He also went off telling me how much more brain power he had over mine. The little stinker knows he is smarter than others and sounded so like Sheldon in that moment I wanted to scream. I told him how rude that was to say that and that being smart also means knowing when not to say something that could hurt others feelings. I am so glad he is getting more ABA therapy this year and working on his behaviors instead of being at school full time. I have news in the school department but will write about that next post. His focus on his behaviors I think will be more beneficial in the long run.

Friends

   This is a subject that I have a hard time tackling with Jacob. He is so forgiving and doesn't understand when someone is being mean to him. I have caught him on so many occasions flat out ignoring what was said to him. I don't have the heart to tell him what the other child had said was mean and not sure how to have him confront such a child either. I almost like it that he ignores them so that he can move on. He doesn't seem to hold grudges against them either, because the next time he is with them he is happy to see them and calls them his friend.
   He does have some friends that are excepting of is social awkwardness. Most are adults. I feel tears well up just thinking about it. I just wish more parents would talk with their children about his disability and how to behave around him. One child told him he would be an embarrassment while preforming to his face. What is sad is I have told his parents of his disability and it leaves me speechless as to why he said mean things to him. I guess the parents never discussed this to their child, I don't feel it is my job to teach other peoples children what is appropriate to say to others. But what this child has said to Jacob on numerous occasions is inappropriate to say to anyone.
   I also have encountered the tattle tail children too. Making sure I know every wrong doing of Jacobs because again they think everything he is doing is somehow bad. When some of it is social miscommunication between their child and mine.  Again these children were never told of Jacob's disability and for some odd reason enjoy seeing him get in trouble for some reason or another. He continues to forgive these kids too because either he really wants friends or his heart is just to big for this world.....which I believe the later. He is so loving and to those who treat him with the most respect he gushes all over them!

Belly Giggles

I LOVE belly giggles! Something magically happens when my kids laugh. As if the worlds problems are on hold. I feel refueled when I hear them. They are what gets me through the tough times and makes the happy times over the top. I will admit I have been known to steal a few of these with tickles! I am a true believer that happiness is the best medicine. It doesn't cure everything, but it sure fills me up when I need it the most. Giggle on...

Change of Plans...What Plans?

As I sit here with my second cup of hot tea this morning I am weighted with more decisions that I have for Jacob. In a happy world I wouldn't have to plan ahead knowing that his ABA therapy will decrease in hours in the next few years because insurance will not cover him since he should be able to go to school right? I mean that is our goal anyway. To be able to get through the day and be "normal".  Well last year didn't work so now what? One thing I have learned through all this is that mistakes are bound to happen and one persons normal is not another ones normal. If I seem cryptic I don't mean to be. I want to give Jacob opportunities to work on behaviors and I thought I was doing a great job but just had a wake up call that I am really not. Plus we might be throwing away hours of therapy by attempting to plug in home school at home and doing social and speech therapy outside of ABA. We are losing hours that the insurance will not give us later. I feel like a juggling act gone bad. What should we do? I don't know, I thought that we were doing what was best for him, I know I'm being overly critical of myself. I have pushed with him on so many things and thought it was enough. I now need to step it up. This is more of those hard choices I was talking about before.
 

Jelly on the Belly

Since he was 6 months old we have had to get Jacob regular ultrasounds on his kidneys due to a genetic condition both he and his sister have. It is called Beckwith Wiedemann Syndrome. Here is a link to explain: http://en.wikipedia.org/wiki/Beckwith-Wiedemann_syndrome. Basically an overgrowth syndrome and he had mild features at birth, but since his older sister had the kidney cancer associated with it we have him checked every three months. He will be getting these until 8 years old so we still have a year and half left. I try to make  it as fun as I can and distract him during it. At least it is painless unlike the blood tests they did until age 3. He loves calling it jelly on his belly and popping bubbles while we do the scans. Lately he is into watching his organs move while they do the scan. This week he managed to talk the technician into looking at his breakfast swimming in his belly and see his intestines and bladder. Only a matter of time before he asks to do it himself. Scans were clear, so I can now relax until November....