Five Things THIS Autism Mom Wants You to Know

5.  My Son's Diet has NOTHING to do with his autism.

Carson was born with a rare metabolic disorder known as PKU, which is a recessive genetic trait that causes an enzyme in his liver not to function properly, so it is not able to process all of protein.  This can cause toxic levels in his brain if not treated properly, which can cause permanent brain damage.  This is tested for on all newborns through newborn screening.  His PKU was discovered within a week to 10 days of his birth.  PKU HAS NOTHING TO DO WITH AUTISM.  Therefore, Carson is on a strict medical low-protein diet for PKU, which is VITAL TO HIS LIFE.  He is NOT on any special diet because of autism.  I wish I could stress that more so everyone could understand.  It is a currently growing trend that some people with autism are doing gluten-free and casein-or-dairy-free diets, which many claim to help with autism symptoms, severity, and behaviors.  I do not wish or need to discuss whether or not this treatment is helpful or effective.  It has no bearing for me or my family because Carson has his own specific diet he has to follow, and we are doing just fine.  So please, take me VERY SERIOUSLY when we deal with Carson's diet because it is extremely important to his health, NOT his autism. 


4.  Every person with autism is an individual.

Autism is a very broad spectrum disorder.  There are many characteristic behaviors and symptoms used to reach the diagnosis, but no one person probably exhibits all of them.  They are all very different and unique.  You cannot just use the word autistic to describe a person and have a sterotyped picture in your head of the way that person is.  NO two people exhibit autism in the same manner.  Carson is considered to be on the milder end of the spectrum.  He has a few repetitive behaviors, which tend to change over time.  He has very blunt and straight-forward speech, so he doesn't necessarily get sarcasm or figurative language.  He loves routines, has an excellent memory, and does very well when you explain things to him very literally.  He gets very excited, and sometimes has a hard time concentrating, while other times he can focus for hours on something.  He is a typical boy (and a bossy big brother) who loves to run, jump, play, ride bicycles, drive Gators, throw rocks, you name it.  There is so much about him that is completely "normal".  He just may be a little awkward to some at times, may have a hard time understanding how others feel, and sometimes has dramatic reactions to unexplained things.  He is an individual with his own thoughts, feelings, and opinions, and I expect him to be treated that way.  Not as someone who is "autistic", because there is no real definition.  Which also means, there is not just one way to work with him, either.  Not all strategies fit all people and all situations.

3.  Raising a child with autism is not easy, and I am sure living with autism is hard, too.

I get frustrated.  If I had any advice for parents out there it would be that it is ok.  It is normal.  We are not super-human just because we were chosen to raise a child who has special needs compared to most.  We are still human like everyone else.  I get upset and angry at my children.  I yell and I punish and I have meltdowns too.  I feel horrible about it when I do.  The reality is, this is difficult.  We have to try so many different things to help Carson understand how to behave and how the world works, and sometimes it takes a while to find what helps.  Even then, it changes all the time as he is constantly growing and changing and learning.  Keeping up is a very daunting task.  It takes a lot of time, thought, and energy.  Sometimes, I need to sit myself down and think about how Carson feels.  He gets frustrated too.  He gets angry.  He doesn't understand a lot of things, and I can't always explain them for him to understand.  It is easy for us to forget that so many little things which come so naturally to us, like putting on shoes, are such a challenge for him, and he has to work on them.  It is so hard, but I need to try to remember to think about his feelings and not be so quick to react harshly to a bad behavior.  There are just so many extra challenges.  Out of that come the wonderful victories, when it feels so good to see his mind click and understand something!  I love it!

2.  Think before you speak...and before you judge.

One of the most important things I have learned in my life's journey so far is empathy.  I am very aware now of other people's children when we are out in public, and I get very irate when I see someone being judgmental toward a parent having a hard time.  Everybody has an opinion about parenting, even if they have no clue about parenting at all.  The last thing any parent wants is the unsolicited advice or opinions of strangers, especially when out in public.  It is hard enough trying to fight off feelings of embarrassment when dealing with our children if they are upset or misbehaving.  What parents really need is support and understanding.  That is not to say that there are not just some complete idiots out there with their kids; there are, and I am pretty sure I have seen a few.  But far be it from me to judge whether or not someone is just being an idiot, or just has a very difficult child, maybe even with autism.  Behaviors that come with autism cannot just be "spanked" or "bribed" away; there are many reasons why it is difficult, and if you have not been there you have NO IDEA.  I am the kind of mom who is going to take my children out no matter what.  They need to learn how to behave in the world and how to get along with other people.  Keeping them at home when they are being "difficult" does not teach them anything.  How am I supposed to raise my children to be functioning members of society if I am too concerned about what "society" thinks when my children act horribly in public?  Have a little patience, and sympathy, for parents out there who are trying their best, like me, to adapt their children in this world.  You can thank us later when they grow up to be high-functioning members of society, maybe your doctor, or maybe even your president. 

Which leads me to the #1 thing I want you to know, and that is:

1.  We just want love and acceptance.

If you know me, whether family, friend or acquaintance, you know about Carson.  My Carson is a very sweet, kind, loving, precious boy.  He is not mean, hateful, or violent in any way.  He is an innocent little child, and I would love for him to stay that way, not to be corrupted or changed by the world.  I have many fears and uncertainties about his future, but I keep faith and hope in my heart that tells me, because of his wonderful personality and his adorable face, he will be just fine.  I have dedicated my life to taking care of him and all his needs, and do the same for all my children.  I just want what any parent would want, for everyone to love my child and care about his needs as much as I do.  I guess this is why Carson starting kindergarten this fall has all these thoughts so heavy on my heart.  He is going to be in a different environment than where he is now, where his actions and behaviors are not as understood and accepted, and where he may become noticeably "different" in the eyes of others.  Perception is a huge factor in treatment and fairness.  I fear that autism sometimes carries a certain stigma that may cause people to automatically think that Carson cannot do certain things.  Carson can do anything he sets his mind to.  Carson is just like any other person.  He has his own personality, feelings, and basic needs, he just sometimes sees things, hears things, feels things, and thinks about things differently than most people.  He is very intelligent and knows most everything he should know at his age plus a bit more.  He is an amazing boy who deserves every opportunity life has to offer, and I hope that everyone out there who works with him now and in the future will be able to see past a diagnosis and see a child with a bright future who just needs a little extra help and different strategies along the way.