Raising Awareness

Spring is a very busy time for me.  I have committed myself to do whatever I can to help raise awareness for the things my children, and all of us as a family, must face every day.  I hope to promote understanding and acceptance by educating others about these conditions, from a personal (not professional) point of view.

Autism

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!

People also want to know how Carson is doing socially.  He has friends.  He is social; he LOVES people.  Everyone close to Carson knows he is a sweet and loving little boy.  At times he also can be bossy and controlling.  Some of these instincts are natural for people with autism.  The word "autism" actually originated from the Greek word "autos" which means "self".  It's "selfism".  People with autism aren't usually able to understand how others think, and only think of how things affect themselves.  They typically internalize everything and lack the ability to outwardly express themselves in a socially acceptable way.  There are exceptions, and Carson can sometimes be sympathetic to others, but truly only thinks at times that everyone thinks like he does.  Sometimes he probably thinks we can read his mind, which is part of the communication problem.  Like he thinks he already expressed himself, when in reality we have no clue what he meant!  There are communication gaps, but this little guy has made HUGE strides!!!  I am so proud of the little man he is becoming!  We work hard to keep him active and social and learning about the thoughts and feelings of others.  I never want anyone to perceive him as selfish, even though it will appear that way at times.  It can be frustrating.  But the way he can communicate and express himself under the circumstances is nothing short of amazing!  My little guy is growing up, doing awesome, and surprising us every day!  LOVE HIM!

PKU

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

Having two kids with PKU is becoming very interesting!
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

Allison, on the other hand, is entering the terrible twos.  And as far as I know, she doesn't have autism like Carson, so she may be a very different case when it comes to her PKU diet.  So far she is a great eater, as she likes many of the things she is allowed on her diet, like fruits and vegetables.  But she is different than him in that she wants food that we have, and whenever someone eats anything, she thinks she must have something too!  Thankfully, as long as I can offer her a low protein alternative, she is satisfied with that.  She will probably be more difficult to teach about the diet as she comes into understanding, but she has the potential to handle it very well.  She will not be alone.  She will learn she can eat like Carson, but not all the same things as Maggie or the rest of us.  And I am sure in the future she will experience emotions that we have not had to deal with yet.  But I am ready.  I have dealt with adversity my whole life.  I am as prepared to deal with this as one can possibly be.  After all, God made each one of us special in our own way.

Thank you for visiting my site and reading about my family.  My goal is to educate everyone, which is part of spreading awareness. and to advocate acceptance and understanding.  People can be so quick to judge others, but we only see what's on the surface sometimes.  I want to encourage everybody to remember that everyone we meet is facing a battle we know nothing about.  Sometimes you don't realize it until you have faced certain battles yourself.  I know I have.

The best thing that keeps me positive is telling myself this:
Life is one amazing adventure; enjoy the ride!!!!