acceptance and making peace with Autism

I’ve done a great deal of reflecting lately. Having my hand bandaged and being in an extended lethargic state of recovery, I’ve had the time to do so. There is so much to reflect upon. It seems that these times when you are forced to slow down are a blessing in disguise. I feel frustrated because there is so much to get done and I can’t so I just throw my hand(s) in the air. I’ve reflecting upon so much. I have done a lot of contemplating where I am in the raising of each child and how vastly different each of them are. Different kids, different needs. Now that my wrist has been set free of my cast from the surgery, I can type again. YAY!

I think about where I was a year ago. We had no diagnosis; just hunches and lots and lots of fear. Oliver had just been evaluated by the school district. I was a mess. Sadness wrapped in a thick layer of depression from feeling out of control and frightened. Oliver was tested at between 1 – 2% in social skills. That was devastating. I remember sitting in the parking lot of Burger Master on Aurora.  Sobbing hysterically. Not knowing what to do. Oliver sat in the backseat drinking a milkshake, spacing out, staring out the window. That was such a low point. It was so scary. I have never been in denial of where we are at with Oliver. I think that if Oliver were my only son or my oldest child, it would be a different situation. Also the fact that my mom was so good at grasping the bull by the horns always set a great precedence for us. Even though it had been a few years between kids, so there was no one to directly compare him to, I knew that Oliver was different. He wasn’t connecting the dots and jumping to the next milestone on his own. I figured that maybe different kids just progressed differently. I still cannot watch videos of him when he was younger because I don’t know what I don’t want to see. If there is obviously something there and I didn’t see it I will feel bad. If there doesn’t appear to be anything, I will feel bad that maybe we did something to cause this. I’ll get to the point where I’m ready to watch these, but I am just not ready yet.

Sometimes I want to wake up and find that this whole autism thing has washed away. Even though sometimes it’s not the most difficult thing that our family is dealing with, it is undeniably the thing that pushes us over the edge because of the amount of all encompassing worry involved. I’m learning to live with it and recognize the beauty of everything that we are granted. Even though it seems like too much at times, I have made peace with where I am. I recognize how volatile this world is and how something that I have never even heard of can invade my life tomorrow. So, I need to be okay with today. Not only do I need to be okay with it, but I have to embrace it. I think that part of embracing something is accepting its flaws and weaknesses along with it’s beauty and strength. I accept that there are going to be worse days than I’ve seen, but I also believe whole-heartedly that the best, most glorious days are yet to come.

Another large part of acceptance is giving up control. I see parents who feel as powerless in the face of autism as I do. We are courageous. I also see parents who are absolutely courageous upfront, seemingly fearless. I bow down to you and praise you for paving part of this path before us. It is downright scary at times the effects of autism has upon on a family. I don’t feel as much fear when I admit that I don’t have control of this. I can try and control Oliver’s diet, vitamins and supplements, therapies, etc, but I have to make a separation about what I am trying to control. I cannot control autism and I cannot control Oliver. My friend, A, today told me that she was reading a book about ADHD and the whole first chapter spoke of how first and foremost you must love your child for who they are.  Indeed, that is it! That is the first step in acceptance for me. Sure, I would love for autism to leave us, to free Oliver of its very intense grasp, but if not I will love him just the same. Setting aside the expectations that you have for that sweet little baby that you held so tightly when they were born and promised them that nothing would ever, ever go wrong…that takes a great deal of faith to know that it is just going to be okay.

I also reflect upon the people who have entered my life in the past year and I simply can’t believe my blessings. I have learned a great deal from the courage of people who are facing autism and life’s many other challenges. The tears we’ve shed, the laughter…my life is so full because of all of these amazing souls that have passed through my life and left a huge impression upon me. I cannot imagine my existence without them and the lessons I have learned from them. I feel a tremendous sense of community and support. I’m so grateful.

Although sometimes I don’t want to be more aware of Autism, I remain in awe of Awe-tism. How awesomely consuming it is. How much time, energy, money, and strength that it demands of me. It doesn’t ask me patiently and wait for me to say, ‘just a sec’. It shrieks at the top of it’s lungs for me to hear it and drowns absolutely everything and everyone else out. I’m still listening but sometimes I just really want to turn the volume down.

one week down

Well, after this evening, the gfcf diet doesn’t seem like such a big deal. We have the most delightful babysitter. She texted me that E had thrown up. After my autism support group meeting I headed home to help deal with the barf situation. E was fine and running around being absolutely darling. O was a disaster. Darnit. I guess that he was wondrous all evening until E threw up. I am beginning to see a trend when the shift in attention diverts from O, he (sometimes) loses it. Gosh, who knows! O basically lost it tonite because of no real apparent reasoning. Well, real and apparent in my world has a wholly different meaning in his. Screaming, crying. Then, intentional throwing of apple juice. Twice. Apparently we didn’t have the right color straws to suit his mood. What the heck. I so should have predicted this! He NEEDED purple AND black. I should have known! I clearly wasn’t thinking thru this well enough. After this, he zoned out for a long time. Then he came around sheepishly and was sorry. He said that he is so sorry for throwing the apple  juice on the floor two times. He then suggested that we should get some more straws the next time we go to the store. Wow. That’s progress. If we could just work on the meltdowns now.

The diet has been going well for us. To be selfish, I have to say that I feel great! No gluten, dairy for over a week. Don’t crave it either. It’s getting a little easier. The bread substitutes leave a lot to be desired. I found tapioca flour hot dog buns. Made them for J and he (Mr. Silver Palette himself) didn’t even know the difference. O liked them, too. There are some brands that are good, and some that are disgusting. After making homemade gfcf pizza last night, I’d like to venture into the bread baking. It was actually pretty good. I’m going to borrow a bread machine and see how it goes.

One issue that has gotten worse has been the biting, oral sensory issue. We’re on the waiting list at Rosemary White for Sensory Integration Therapy. O constantly has something in his mouth. Must be chewing at all times. Last night he was chewing so hard he actually bit his inner lip and he didn’t notice it. He has started to bite his fingernails and will chew on the skin on his hands until they are raw if he doesn’t have anything to chew on. He chews on his shirt, sleeves of his coat, his blanket, his stuffed dog, ‘Puff’. He did this when he was younger, but hasn’t been doing this for awhile. These sensory issues seem to come in waves. It is worrisome. Something must be off kilter with him sensory-wise. I could tell that he wanted to hug me this morning when he woke up, but instead he punched me. Then he shoved E over. It didn’t even phase him that he did something wrong. Just kept on walking down the stairs. He scares me when he gets like this. It seems that there is not much that we can do at that moment to help him or help the situation other than removing ourselves from the situation. E was crying saying that O hit him. I gave him attention and he felt better. I was really happy that he didn’t smack him back.

I’ve been thinking about how E’s life is going to be different because of O. I know that in the long run, he will be significantly enriched by having O as his older brother, but I am anticipating some hurdles. I see him overcompensate for O already and he’s not even two. One of my weaknesses is my anxiety involving time. Must be on time. I freak out if I’m late. O is always forcing me to be late and it makes me crazy/crazier. He either can’t focus at all or is entirely over-focused. There is very little middle ground. Trying to get socks, shoes, and a coat on him and get him into the car is a major feat. E goes and gets his own socks and shoes and coat, then he gets O his shoes and coat, too. I can see how he wants to help O and it is really sweet. They’ll be two years apart in school and I wonder how that will play out for each of them. I don’t worry as much about J because he’s so much older than O and E and he’s establishing himself well in his own groove. We’ll deal the issues as they present themselves or blow up in our faces. Either way 😉

I’d like to present my mom with the award for ‘The First One to Find Gluten-free Casein-Free Donuts’ Award. Woo Hoo! As a prize you get to have a GFCF donut with us tomorrow! Can’t wait.