April is Autism Awareness Month. This year, I was unable to write a post due to being SO busy, but I did attend several fundraising events hosted by local restaurants to benefit our autism support group, I wore my T-shirts and ribbons and actually generated some questions from people, and I shared on Facebook.
People who follow our family want to know how Carson is doing, especially in school. Carson's school experience is a great one! He is finishing up first grade, and next week is his IEP meeting for second grade!!! He is so smart, so we know he can do well academically. He makes A's and B's. He does struggle with doing the work, though. It may appear that people with autism can be lazy. Sometimes I feel like Carson is being LAZY. But we MUST remind ourselves that Carson perceives work, and most everything else, differently than we do. We should not call it laziness. There are two very good reasons that school work is hard for Carson: 1. It requires him to sit still and concentrate, which is difficult for people with autism. He likes to keep his body moving because it gives him sensory input he needs, plus all the other sensory factors in the environment can distract him from focusing on his tasks; and 2. It requires him to use his fine motor skills to write. Carson naturally struggles with fine motor skills and must attend occupational therapy every week to help him work on those muscles. He has a weak control of the muscles required to do things such as write, paint, color, or button or snap pants or shirts. He can write well now, but the problem is he gets tired very quickly from performing these tasks, and with good reason. Sometimes we need to be reminded that he cannot help it. We are so blessed to have teachers, aides, and friends at school who know and understand Carson, and are so willing to help him in every way. These people are special to my heart! But I also wish more accommodations could be available to him at school. If he could complete more of his work on an iPad or a computer, he would be able to show what he knows and learns so much better!
And now it is May, which is PKU Awareness Month. Two of my children have this rare genetic disorder. Carson and Allison are my PKUers! If you are new to my site and my family, and if you are curious to know what PKU is, please feel free to browse my site. I even have a PKU tab, or you can search from the Topics list on the side. PKU is an enzyme deficiency that causes their bodies to be unable to process phenylalanine (phe for short), one of the amino acids in protein. It is diagnosed shortly after birth through the Newborn Screening Program (heel stick), and treated with a low protein diet and a medical protein formula without phe. The diet means that they cannot eat things that are high in protein, like meat, dairy, and nuts, and even flour! We have to calculate everything they eat to meet their needs. So yes, I do math every day! I have to weigh and measure and add and figure how much protein they get, based on a prescription from the doctor and nutritionist from UAB. It can be lots of work, but after almost 7 years, I am used to it!
|Carson, 6, and Allison, almost 2|
Carson does very well with the diet. I know he has a hard time expressing himself, but he has expressed sadness over having PKU, and wanting to understand why he has it. Having Allison, as well as his friend Noah, has helped him feel better about it, and he knows he is not alone. I have never had a problem with Carson sneaking off-diet foods or even really wanting it. I have told him that anything he wants to try, I can make him a low protein version of it. He is not an adventurous eater, of course, but he will try things sometimes, which is wonderful!
|Carson and his friend, Noah|
The best thing that keeps me positive is telling myself this:
Life is one amazing adventure; enjoy the ride!!!!