Monday, May 2, 2016

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!!!!

Monday, February 29, 2016

PKU Awareness for Rare Disease Day: How We Survive the Holidays...and Every Day

Today is a rare day...it is Leap Day!  It is also Rare Disease Day.  While PKU is not really a "disease", but rather a genetic "disorder",  I like to try to take every opportunity to raise awareness and remind everyone in our lives, and share with those abroad, what it is like to live with PKU.  Today I want to share another glimpse into daily life at our house and how it impacts our holidays.

PKU (phenylketonuria) is NOT a disease, but a genetic malfunction of a liver enzyme that breaks down the protein amino acid phenylalanine ("phe" for short).  It requires a medically prescribed and regulated low protein diet (not just a "special" diet) for LIFE, to ensure no damage is done to the brain and body by toxic phe levels.  A person with treated and well-managed PKU displays virtually NO symptoms.  There is no visible evidence of PKU by just looking at a person.  It is only discovered shortly after birth by the Newborn Screening process, which is the heel prick done to all children born in the U.S.  The most widely used treatment is the low protein diet coupled with a medical formula that is specially manufactured to provide all necessary protein without the phe.  For more information about PKU, follow links on this blog and feel free to browse past posts.

In the Rice household, we have 2 pretty special PKUers, Carson, who is now 6, and Allison, who will

be 2 in June.  Almost-4-year-old sister Maggie is our only non-PKUer.  Every day is an adventure! People ask me questions all the time like, "How do you do it?", "What do they eat?"  "Where do you buy their food?" or "Will they outgrow it?"  We especially get the most questions around the holidays, when we see family and friends we aren't around as much throughout the year.  Those who are part of our everyday lives are already versed in PKU lingo and the diet requirements, and are almost as adept as we are at knowing the ins and outs of dietary management.  But those who aren't around or in contact on a daily basis perceive it more as a mystery, and are either mildly curious or view it as too complicated to get involved.   And to be honest, I do get tired of explaining it to people sometimes, which is one reason I refer to my blog!

Since my kiddos are still very young, we have absolute control over what they eat.  I do try to match low protein foods to what the rest of us are eating, just to make an effort to show inclusion for my PKUers.  Carson does, on rare occasion, ask about our regular foods, mostly out of curiosity.  I always make sure he knows that if there is ever a food he is curious to try (that he otherwise could not have), I will do my best to find a low protein version to make or buy for him to try.  The same will go for Allison, who I presume will show more curiosity and desire to try other foods compared to the routine-driven Carson, who, partly due to autism, would be content eating the same thing every day for long periods of time.  For example, when I make pasta dishes, I always use sauces that are low enough in protein per serving to fit their diet prescriptions.  I use Ragu traditional spaghetti sauce, pesto, a homemade stir-fry sauce, and homemade stroganoff, all without meat, of course.  We have lopro pastas that I boil separately for them and just add the same sauce to their own pastas.  I order these pastas online from a lopro food manufacturer.  At this time, we prefer Nutricia's Loprofin noodles.  Carson likes spaghetti noodles and spirals, while Allison likes animal shaped pasta and macaroni.  Paired with a veggie or two, this is a very common supper at our house.  If I make a sauce that is too high, like mac and cheese, they do have their own powder I can mix with non-dairy milk or creamer to make a lopro mac and cheese.  Right now, Carson doesn't like it anymore, but Allison will eat it.  Most of the time, if we have something too high in protein for the PKUers, and it is something they don't like the lopro version of, they are happy just eating one of their favorites, usually pesto!

We also have a few "convenience" foods.  I can purchase ready-made foods from private companies also, such as Cambrooke Foods.  They have mini pizza pockets and toasted pierogies (like potato and cheese filled ravioli) that the kids like.  These things are specially made low protein and we just pop them in the oven.  Other quick lopro foods we use are sandwiches, although I make the bread myself in a bread machine using special lopro ingredients, and powdered mixes to make things such as pancakes, eggs, and hot dogs.  The rest of the food in their diet consists of things we can buy locally.  They eat certain dry cereals for breakfast, fruits, veggies, potato chips, tater tots, and a small selection of gluten-free foods that are appropriately low enough in protein, such as pretzels and some cookies.

I suppose most people want to know how we handle meal time when we are outside of the home.  We are a very on-the-go bunch, usually eating out 3-4 times a week.  I find it much easier and refreshing that I don't have to cook them something!  However, some of the leg work I have done ahead of time.  At most sit-down restaurants, I bring them their own lopro rolls that I bake ahead and keep in the freezer.  I just pop one in a baggie and take it in one of their cooler bags we bring everywhere with their medical formula and other snack foods.  I also bring them applesauce as a filler.  Usually, they will eat items from the menu such as broccoli and French fries.  Allison will eat more of a variety of vegetables, such as green beans, carrots, and sometimes zucchini.  Carson loves spaghetti squash, which we find at Ruby Tuesday.   And don't forget the salad!  Carson loves to get the salad bar and make his own salad with lettuce, cucumbers, and carrots.  They can have oil or vinegar-based dressings, Italian being his favorite. They also eat rice and tortilla chips at Mexican restaurants, but these are higher in phe and we try to do less often.  Everything they eat is in measured amounts, which I have to portion out for them, and I have done it long enough I can just estimate without having to measure or weigh on a gram scale.  As you can see, there are options, though not a wide variety, it is still enough to fill them up with the few extras we bring along.

When we visit someone's house, I always just bring their food with us.  I try to ask ahead of time what food will be available, and determine if there is anything there they can and will eat, and then just fix our own to take with us.  Most friends and family we visit are used to this by now.  Grandparents keep food on hand that they can use to prepare meals for them if needed during a visit.  Holidays, we usually have the same foods and I can cook something ahead of time to bring, or do it when I get there.  Needless to say, we carry a ton of baggage around when we travel!

Last, but not least, for special occasions, holidays, birthdays, etc., I keep lopro cupcakes baked and stored in the freezer.  When called for, I just get them out, place in our little plastic cupcake carrier, and decorate accordingly.  They can use just about any kind of icing, so that makes decorating easy and makes it look the same as everyone else's.  If something is served other than cake, we have other baked goods we can bring as well, such as cookies or brownies.  I bake these items using special lopro mixes as well.  I try to keep cookies or brownies made all the time so they will always have a treat.

Here are some examples of foods we have eaten lately:

A low protein trail mix for Allison, made with Rice Chex, gluten-free pretzel sticks, raisins, and mini marshmallows.

It's a big hit with baby girl!

Which one is the low protein version pancakes and eggs?

Cambrooke's Instant Chicken Noodle Soup

Not bad!  He didn't finish it, but it will hopefully grow on them.  It was really good!

Lopro taco made with Ortega corn shell, salsa, lettuce, carrots, and imitation cheddar shreds.  Delicious!  And all store-bought items!