What is Autism? Part 3

Fast forward our lives  6-7 years and four separate autism diagnosis' later.

 

Our lives have in deed, been forever changed. But not the change you think of. Oh how heartbreaking and devastating those first few days (or years) are. 

 

The initial thought that this life, is actually a death sentence.

Quite the opposite...

 

It's a LIFE sentence.

 

I mean that as the most wonderful thing (for the most part). While yes, we have our daily challenges and struggles, and will for the rest of our lives. We have FAR more success and accomplishments even their typical peers can't comprehend.

Our lives are also far better than that of our special needs counterparts. Even other kiddos with autism also deal with epilepsy and other life threatening co-existing conditions.

Our kiddos are healthy.

Mostly.

There are some co-occurring diagnosis' that also go along with their specific situations. Such as, they severely lack essential vitamins and minerals and amino acids. Those that are needed to have homeostasis in ones body. There are a few contributing factors to this. First, most kids on the spectrum have a SEVERELY limited diet. I'm not talking your typical toddler picky eater, it's way more complicated than that. Some kiddos have been hospitalized for refusing to eat or drink.

 

My Joe (5) REFUSES water and most other things.

REFUSES.

We even tried to not give him anything for hours and hours to wait for him to break down. It was 2 days later, and I had to give in. I've heard far too many stories about kiddos having to be hospitalized just because they were dehydrated because they were refusing to drink. It doesn't matter how HARD you try.

You CAN'T make them.  No matter what you think "might" work.  So now we keep a detailed food journal coupled with a weekly weigh in. And pray a G-tube is not in our future.

Not to mention that the majority of their little bodies have issues with the inability to detox all the nasty toxins out of their bodies. On the flip side, it  also keeps their little bodies from being able to absorb ANY nutrients that we are ABLE to get down them. Which then turns into a tailspin of related conditions. Which is mainly in their gut. It really does control the entire bodily functions.

With all this being said. I am so grateful for my children! I hate when people say they wouldn't change the fact that their child has autism "because that's who they are".

I disagree on many aspects of that statement.

First of all, that means you're telling me that "autism is who your child is".

 

FALSE.

 

Your child is who he/she is because they are their very own person. They just "happen" to have autism. Which is only a small part of who they are. It doesn't define them.

It's not WHO they are, it's just a small part of them.

A mere description. 

 

It's not their only reason for existence. I hope that makes sense with out sounding to harsh or judgmental.

 

That's not my intentions. At All!

 

Second of all, while I accept the fact that my children have autism, and they are so super and unique because of it, I can't say I wouldn't take it away if I could. If we even had a CLUE what goes on in their little minds, I think we would all be blown away.

 

I would take away the fact that my kiddos can't tell me when they're scared, hurt or sad. When they are being bullied or just totally unsure of their life's surroundings. When they get sick, they don't know how to tell me exactly how they feel or what's going on. I have no clue on how I should be helping.

 

I would take away the meltdowns. In public. Meltdowns are usually a result of an underlying issue they can't communicate with anyone. I would take away all the teasing, bullying and being purposefully left out by peers, just because they are "different" or they seem "weird" according to societies standards. I've cried myself to sleep thinking I would give ANYTHING to change the fact my baby comes crying to me because HE KNOWS he is "different" when all he wants is to be accepted.

I once heard it explained to me this way, imagine being dropped off into a foreign land. You don't really know how to navigate to be able to get you around due to the language barrier. You can understand the language a little, when being spoken to. However, you have NO CLUE on how to speak the language to be understood. Imagine how frustrating that would be. Now imagine having to live there for the rest of your life and NEVER being able to speak the language. At least not with out INTENSIVE interventions.

This is basically what these kids live with on a daily basis, for the rest of their lives. We work and work on it. Yes, we do have success, but with that usually comes regressions. But that will NEVER slow us down. We are determined to make their lives as happy and functional as possible.

 

I love my children with all my heart!  I will continue to move heaven and earth trying to make their lives the best possible for them!!

 

As any mother would do.