Autism Awareness

As this Autism Awareness Month comes to a close, I want to say that I hope I helped to raise a little awareness in some way.  I have only been involved for a few short weeks, and in that time all I have done is written posts and shared things on facebook.  I hope to become more involved in the future, as making connections is a great way to get information about services and ideas to help in personal situations. 

Carson is still very young and we have no idea what the future may bring for him.  I know whatever that may be, God has a very special plan and purpose for his life.  He has blessed Carson so much already in his short time here, and I am so excited and hopeful for his future!   I know we have many "awareness months" to come, but hopefully one day this will all lead to some kind of cure, whether it is new information about the brain and how to treat or repair it, or the final perfection of gene therapy.  I have read some very informative information about gene therapy in the PKU Newsletter, and it helped me understand what the trials are like and what problems they are facing, with all trials, not just PKU.  Researchers, from what I understand, are having trouble finding a vehicle in which to get the corrected genes into the body without being rejected or causing serious harm.  I believe one day they will find a way, hopefully in Carson's lifetime.

Until then, every April I will be wearing my puzzle pin, writing posts on my blog, and sharing information on facebook about autism.  I will be walking and spending money and raising money to make sure my child is not forgotten and is accepted and hopefully understood.  And every day, not just today, I will fight for him to have the best and most exciting, happy life of any child in the world!

So when you see us in Walmart, or the grocery store, or at school, and Carson is having a bad day, try hard not to judge my parenting skills.  Don't think that I don't discipline my child, teach him right from wrong, or show him how to behave in public.  Don't be offended when you ask him a question and he doesn't answer you, and don't let it hurt your feelings if he screams as soon as you walk up to us.  It is not personal.  Carson is not a bad child.  He loves people.  He has moods just like we do, and sometimes those come in extremely loud packages.  Just know that I am doing everything in my current power to help us through any situation we face, and I am trying my hardest to help him adjust to the world around him so that one day, maybe he can have a better understanding and deal with situations himself.  I am promoting his independence.  I am his mother, and I am SO proud!  And try to remember there are many other mothers out there like me, going through these same things, so think before you speak, or judge, if you do at all.  We just need a little peace and a little uplifting.  Thanks for your patience.

Happy Autism Awareness Month!  And good luck to all you newbies out there, like me.  :)

Some Days Are Like That

Let's be honest for a minute.  How many of you out there have ever lost your temper with your children?  Have you ever shut them in their rooms and gone to the other end of the house for a "timeout"?  Have you ever gone out on your porch just to scream?  Do you find yourself daydreaming of being on a tropical island with only the sound of the waves washing away all your cares while you soak up the sun with your toes in the sand?  I have!

As a typical parent, some days can be very...challenging.  Some days can be fun and playful and sunshine and roses.  The challenging days are the ones that test us.  They test our patience, our faith, our strength, our character.  Some days we rise, victorious.  But there are days...oh, those dreaded days...when we feel like we have completely failed.  There is nothing we can do.  We just want to give up, and we feel so guilty for it.  Am I speaking just for myself here?  I really feel like I'm not alone.  I talk to my friends and relatives who have young children too, and this is something we discuss a lot.  The days we talk to each other the most are probably those days when we really need support, encouragement, and just to vent.

Now I'm going to step out on a limb. 

PKU and Autism, Too

Carson was diagnosed with autism on April 2nd, which happened to be World Autism Awareness Day. Very fitting. For those of you already wondering, there is no known connection between PKU and autism, and even if there was, his PKU is well-managed enough to not cause any significant damage to his brain. I think he is just a genetic Wonder Boy. We already know he is special, now he must be super-special! I would love to see a statistic of how many people in the U.S. have BOTH PKU and autism. I bet it's not many.

I know everyone out there probably has many other questions, so I will try to anticipate some more of those in this first blog post. Also, there will be many changes to come. Changes in our family life and to this blog. I have decided I will be changing the title because it's not just The PKU Life anymore, and hasn't been for a long time, really. Any suggested titles are welcome!

I already answered the first question most people will probably think of or ask, and that is about this being related to PKU, for which the answer given to us by the numerous professionals we have seen is a resounding "NO". They knew we would ask that too, so we didn't have to ask. Some of you may wonder, then,