Wednesday, August 14, 2013

Guilty

I know people mean well when they say "You're a great Mom", and "I could never do what you do". But sometimes it brings up feeling of guilt for me. I am not super human. I don't have this insane ability to parent my children better than anyone else. Behind closed doors, I lose it. Often. More often than I would care to admit. 

Last night my almost 9 year old son urinated in his bed 4 times. Not while he was sleeping. He was awake. He did it because he wanted me to stay with him in his room and I wouldn't. I couldn't lay on his floor anymore waiting for him to fall asleep as I usually do. Because let's face it....if it gets him to sleep, I am willing to do it. But sometimes it takes hours to get him to go to sleep, and I want to do other things. So Andrew peed in his bed. Every time I left the room. We have tried so many things to stop this behavior. Talked to therapists, doctors, anyone who would listen. Nothing has worked. It's not like normal kids where we can threaten to take away his iPod and he stops. And believe me, we tried that.

Yelling definitely doesn't help, but I just can't stop myself sometimes. And he wants the response. Negative or positive doesn't matter. My yelling just reinforces his behavior. But I am human. I am exhausted. My washing machine has become my closest friend I spend hours a day with. He has also been peeing on our couch, our bed, etc. Out of nowhere. No reason behind it. He just doesn't get up to go to the bathroom. Unlike his nighttime behavior, there is no method to why he is urinating on the furniture. He will be perfectly happy just hanging out and suddenly he is in a puddle. No remorseful behavior. Just laughter. He has been mostly potty trained for a long time, but when he regresses, he looses all learned potty habits. Back to poop smearing again as well. 

We have no idea why he goes through these cycles, or when they will start or stop. And it is not as though they are short lived. This cycle started in November and is still going strong. This is just part of the struggles we deal with on a daily basis with him. So when people say "You're doing such an awesome job", I feel like I am living a lie. I don't feel like a great Mom. When I grabbed him behind the neck hard while directing him down the hall to go clean him up after one of the many pee episodes, I did not feel like a great Mom. I felt out of control.

I am not a great Mom. I am just a Mom. Trying to figure out how to raise a child who will never fully grow up. The days seem endless. As do the nights. I loose my patience. I get depressed. I feel trapped. Then something good happens to give me a single drop of hope to get me through.

Bryan and I are worn out. The moments we get to spend alone together are few and far between. Thankfully, our marriage is strong even when we ourselves are weak and have nothing to give to each other. We try to stay positive. But in the quiet moments when we are able to let go, the tears come to the surface. Only to be pushed down again until the next time. 

Don't get me wrong. I am thankful for the encouragement. I know that it comes from a truly wonderful place. But I am not Superwoman. I do what I have to because I don't have a choice. It is the life that I was given. I have the same weaknesses as everyone else. I mess up a lot. I need help. I need grace. I shouldn't be on any pedestal. I just do the best I can and I fall short often. 

Luckily, no one is usually around to see it. 


Thursday, August 8, 2013

My Son Is More

I love my blog. I love being able to share the highs and lows of having children with Autism. I love sharing their seemingly small accomplishments. I love telling others the things we have learned in this process. I think it is awesome to meet new parents on this journey and show them that it does get better.

But I worry that (especially regarding Andrew) all people see is Autism when they look at my son. That I am so vocal about Autism and advocating for my son's needs, that people fail to see that there is so much more to Andrew than his diagnosis.

He is like any typical child in so many ways.

He loves to run with the wind and lay in the grass.

 He loves watching the rain fall against the window.  

He loves going to the movies and sharing a tub of popcorn with Dada.

  He anxiously waits until winter when he can taste snow on his tongue once again.


He loves going to the zoo and the aquarium. He can name pretty much every animal he sees.


He loves people. Especially family. He will still crawl onto his 89 year old Great Grandpa's lap.


 He loves parties. Birthday parties. With cake and ice cream and lots of music.


He likes jumping on trampolines. The more kids on it the better.


 He likes Disney characters.


He loves to go camping and kayaking.


He loves swimming.


He loves the ocean. He will dig in the sand, build sandcastles, and run from the waves.


He loves snuggling.


He likes to draw.


He loves the holidays and all of the tradition that goes along with them.


 He likes superheroes. Especially ones made of Legos.


 Andrew also has many qualities that many people don't have. Thanks to Autism.

He will never judge another person by their status in life, the clothes they wear, or if they went to college or not.

He will never laugh at someone who has a disability.

He doesn't care if you are part of the in crowd, or more of a nerd at heart.

He won't laugh at your glasses, or freckles.

He does not lie. 

He doesn't try to be anyone but himself.

Once he accepts you into his world, he will always greet you with a smile.

He does not hold grudges against others for things they do wrong.

Contrary to popular beliefs about Autism, Andrew is completely aware of everything going on around him. Even though he is mostly non-verbal, he understands much of what we say. He does not stim all the time. The older he has gotten, the less he stims. And when he does it is usually because he is really happy. 

He doesn't spin anymore. He is not a savant, though he is very good at figuring out technology. He doesn't self injure unless he is very frustrated and we aren't meeting his needs. He is very affectionate. Almost overly so. He has empathy. He knows when someone is sad and tries to help them as much as possible.

Andrew is more. More than what the world assumes he is. He will accomplish more than what people think he is capable of. He is more like everyone else than people think he is. And yet, he has qualities that give him a wonderfully unique perspective on others and the environment around him. He will always have Autism and that may be what people measure him against.

But I promise you.

He is more.