Tuesday, August 26, 2014

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.

Thursday, August 21, 2014

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....

Wednesday, August 13, 2014

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.