The Autism Mountain

Yesterday we spent home...just home. We did a bit of cleaning, did a bit of cooking, did lots of playing, and we watched some home movies. That is always so much fun, looking back and seeing how life was and how much has changed. I especially love seeing my babies, how little they were, how far they have come. When I watch those movies, something else arises in my soul. The knowledge of autism and how it has consumed my family. The videos don't lie. You can see the young, fresh faces of involved and free parents on those videos, just five years ago. Today, our tired and stresed faces, filled with lines of worry and fear, have stripped us of that freedom of the young, fresh parents we were. There is more anger hiding behind our words, more discomfort and sadness blurring our every day motions. And there is a 14 year old child, our son, who used to be free to be a kid, who laughed and danced and smiled...and though he still does these things, still has his happy moments, he is not the free kid he once was. I

know, I know, all children grow up and adolescence consumes them. All children change. But what changes I see when I watch the movies are changes that do not bring me peace. Autism has stripped my son of his freedom, kidnapped him from the happiness I once saw glowing on his face, whenever I looked at him. Though his eyes still twinkle with delight, the delight is short-lived. He has more worries and more fears and more adjustments to make than any child should have to have. And whatever I do to try to protect him, to help him to be happy, I can't take away that aspect of his life. 5 years ago, my son was just a little kid with little kid worries. Today he is a teenager with a teenage body and raging hormones, with a mental state of that kid all those years ago. And he can't work out how to fit the two together. he wants to fit in. He wants to be unique, but not unique becasue of his autism. He wants to be free of anger and pain and worry, but autism has stolen that from him. he will never again be free to just be.

And I also saw my little guy on those videos. He was so smiley, so loveable, so utterly happy. There wasn't a moment that he wasn't being just cute as can be, and laughing and making us laugh with him. He had a loving and sweet big brother who cared for him. And when I look at my now seven-year-old son, I know that he too has been stripped of childhood innocence due to autism. He is not able to run around happy and worry-free, because autism has consumed our home and our lives, and he is unable to escape it's presence for even a moment. And his behaviors today show how it affects him. He is stubborn and head-strong, manipulating and rude. The happy go lucky kid that once was is no longer. I know his sweetness hides within him. I see traces of it every day. I see him smile and laugh and do what little boys are supposed to do. But I also see the worry...how he has learned to escape to another room when a tantrum is oncoming. How he, when he is in a mood, knows just which buttons to push to cause one of those tantrums. How he turns to video games to relieve his stress. How he is another child completelty when I have him alone compared to when Kaeden is home too.

Erwin and I keep trying to reach the top of the mountain. We keep pushing each other when we feel we can't take another step. We are supportive of one another, but sometimes having to push someone else when you can barely breathe yourself starts taking it's toll. We try to shelter our little guy from autism, try to make his world seem relatively normal in the face of a storm, try to compensate for what we know he has had to give up. We try to give Kaeden patience and consistency, to help him with the issues confusing his life. We try to be present and do what we feel is necessary in being good parents. But the video doesn't lie. It is cute and happy and peaceful. It is filled with love and family and closeness. And all of that in our real life today just isn't present.

I can't blame it all on autism, because many factors are present in what has become our life. And it's not an unhappy, sad, dreary place either, our home and family today. It is, however, stripped of that piece of joy we once knew. And that does come from autism. Our young faces have aged, our hair has greyed, our shoulders have filled with worry, our hearts have been beaten. We keep doing our best, but our best keeps sliding further and further behind. I so want to reach the top of that mountain. I so want to look behind me and cheer at the top, knowing we have made it, we've come through unscathed, we've been strong. But we haven't yet reached the top. And even though it looks so close, it's evident we're still a long ways from the top. Our son is just now 14. We've got a lot of years ahead of us. Once we reach that peak there's always another in the distance glaring at us from beyond. Some days, watching old home movies makes the mountain seem even steeper. And the tears that fall down my cheeks are not tears of happiness.

1 comment:

Jade said...

I get a little angry in times like this when I want to hug you and talk to you about this all but I can't! Not your fault I know, hehe, but I have to be honest and tell you that you need to move here to cali so I can hug you when I want to. Its only fair! ;-)

Ohhh my dear friend. Though I have never met you, I know the intensity of your words. I see it every day in the faces of the parent I work with. Autism is a very steep mountain that is for sure. And the only way up it is one foot in front of the other.

I know the two of you have done many many things to intervene in the behaviors, emotional changes, and physical challenges K has, but you have to believe me when I say that there is more out there Tera. There are techniques you can use, there are social stories you can make up, there are activities that can be introduced to him. And you never know what is going to be the life changing attempt.

The teen years have your little man. Even though he has autism, he is still a teen. That takes precedence over the autism. His body is changing, and this will cause the moods to change. Just as we all went though. Hahaha I was the moodiest little witch when I was 14!

I know how tiring it can be Tera but you and your hubby are doing a great job. You'd still have lines and wrinkles on your face if K wasn't autistic. Children wear you out! When was the last time you saw a leave it to Beaver family? Moms don't have time to fix their hair, wear a beautiful dress, and make dinner for the family all while running the PTA, soccer, and running a house.

I don't know a single mom that doesn't have wrinkles and falls over on the bed at the end of the day. Even the ones in their 20'S!

So my dear friend, have faith, and keep your hope, because there are options out there. You are not out, and one of those options could be the key. Ive seen it many many times.

So... with that said, I will tell you this. Tomorrow (tuesday) I work from 9-5. BUT I have a 40 minutes commute to one of my cases. So! If you call me 8am my time or 4 your time you will catch me. Or on Wed I can be reached at from 11am-3pm or 7pm-11pm your time.

Hehe, if we can't make this work after I give you my work schedule I dont' know what to do! hehe

Big hugs my friend and keep that chin up. One foot in front of the other will get you anywhere you need to go. Even up.