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....

Figuring Out Jacob's Puzzle

The puzzle piece represents the Autism world with the idea that the causes of Autism are puzzling and the thought that any one with this condition does not fit in. I was thinking about a few things about the puzzle piece and how it relates to Jacob.  More of how I visually see his condition. I love puzzles and also have been really good at them since I was little. I do feel like everyday is a challenge and can see the the puzzle pieces. I feel like we get them together once and awhile but then one piece alters just as quickly as we get the pieces together. We haven't been afraid to stop trying to fit a piece that just wasn't working in Jacobs puzzle. We have switched therapy, preschool and now school to get him what services we think will be best for him. Autism is puzzling and I am reminded daily that I am going to be kept on my toes with him. Some times I torture myself with thoughts of how bad that event will be and it goes smoothly and others not expecting will be an issue and then they are. I honestly feel like it is a evolving puzzle one that changes as he grows. I love it that he challenges me, because with him I am a better person.

Starting Home School

  Home school came faster than I thought. I am so far three days in and have what I think is a great plan. Executing it will be another story. I have done enough thinking about what I am going to do to wear a person into frazzles. Now comes the fun part, teaching and spending time with Jacob. I have set aside two hours in the morning to work on home school. I also have him doing things at therapy the rest of the day to keep him on track for math and reading. The most challenging aspect of the whole thing has been figuring out where to start with him. Age wise, yes he is a first grader, but academically he is much higher. I am engaging him in science, writing and history this year as well as art. What is so great about this is he is going to have an individual educational plan that focusing on his weaknesses and we don't have to repeat or "review" what he already knows like it was in kindergarten for him.  If I ever hear "I'm bored" I would be surprised.  Him expressing this was a huge red flag before the anxiety attacks happened last fall at school. Having him tested last year was a great start to know where to begin with him. So I feel like we are prepared.
     I am honestly excited about being his teacher and wish I had done the same for Sophia. I know this is what he needs right now since he is such a different learner than what public school can accommodate for. I feel like he is going to have a great year and can't wait to see how much he grows.

Buying a Rocket Ship

Our space obsession has gotten serious now....So the other day Jacob was talking about the atmosphere and how many miles it takes to get out of the atmosphere and into space, which he says is around 60 miles. He then compared it to his dad's  running time which is 3 miles in 25 minutes and how it would be a long time to leave the atmosphere. Jason told him that there are quicker ways to leave the atmosphere by using a rocket for example. Jacob then asked if we could get him a rocket, and Jason told him he didn't have a rocket fund or money to get one. So fast forward to this morning, Jason comes home with four quarters from Grandpa. Jacob is super excited and says " Four quarters is a dollar, and I am going to save these up to buy my rocket ship". I don't have the heart to tell him he can't and how near impossible that is going to be. It will have to be a toy rocket for now.....

Bubbling up with T-ball

I signed Jacob up for t-ball and I have to admit that after 7 practices things are going fairly well. I mean, who is counting anyway right? He has parts of it he loves and others you can just tell his attention span is fading. I was a bit picky in what t-ball I signed him up for too. I mean the little guy has NEVER played organized sports and doesn't have a clue about the rules of the game. I signed him up for the more informational and skill learning class. They play one game the entire summer and I was told today it was more a showcase than a game. Thank God! Jacob is a huge sore loser and cannot control his anger sometimes in a loss. Imagine the steam coming out of your ears mad. Well that is exactly how today went anyway when they played a little game with his team. Every time he didn't get the win he used his hands to show he was bubbling up with steam and used his hands to show it blowing out his ears. Of course there are sound effects to go along with this. Not quiet and cutesy ones either. Jacob is not a withdrawn Autistic he is more the explosive and overly expressive kind. He is a sensory seeker and to be honest it can be a daunting  task to give him what he needs. Last Sunday morning is a great example of sensory seeking at its finest and of course at a public restaurant. He hummed loudly and covered his ears to hear it in his head as he banged this elbows on the table for more sound. I tried rubbing him and giving him really tight hugs as this usually works but it seemed to not be enough. You never know when he is going to need more and the wait for the food was effecting us all at this point. I am glad he didn't scream, or yell about where his food was and a quick game of tracing letters on his back and him guessing which ones I traced distracted him while we waited. I need to be honest and try harder myself to work on finding how to help him control these issues. I do have to say that telling us he is bubbling up with angry is much better than before with no way of knowing what he is feeling and him going directly into a huge meltdown. Baby steps I guess....bubbles, steam and all!