One of the reasons that I started this blog was to increase real awareness of the breadth and scope of Autism Spectrum Disorder. Roo is atypical in his ASD and this was a major stumbling block for us in figuring out what he needed, and so we lost valuable time and he suffered more than he needed to. In some ways he is milder than most kids with autism, which is why his doctor and I agree that PDD (Pervasive Developmental Disorder) is a more apt diagnosis for him based on DSM criteria, but he does not simply have "mild autism". Autism varies in more ways than just one so it is misleading to put it all on a one-dimensional line and call it a "spectrum". It is more of an n-dimensional plane (yes I'm a math geek). He has "atypical autism". This term is of course ludicrous as pretty much everything about autism is atypical, but there you have it.
Sharing what our daily life looks like was one of my original goals, but in the 2 years that I've been writing this blog, I have almost entirely focused on the science behind how we approach and treat Roo's ASD and my ME/CFS. This is all important but I have realized that this is partly because it is hard to present the personal side. It is deeply painful to acknowledge how all of this has affected us personally. It's much easier to keep to the abstract and impersonal, but focus on the personal I must if I am to meet my original goals of raising awareness, processing and healing from what happened to us, and being able to see the chaos of our lives in in a way that makes any sense. A very common theme among parents of kids with autism is a need to go back and figure out what happened to our children. This post is the beginning of a series of "a day in the life" posts that will hopefully put a more personal face on our journey through, and out of, ASD.
It is spring, and the weather today has been a strange mixture of sunshine and hail. I swear some days I feel that my life must be a movie as the metaphors are so obvious. If nothing else, autism is an unpredictable ride from one extreme to another. I woke up this morning stewing about how much I want to attend the AutismOne conference this year, which I can do except for the fact that Roo has extreme separation anxiety. He is nearly 8 years old and still it is so hard for him to be away from me for even a few hours with another trusted adult- how can I leave him for 5 days? Sometimes the resentment and frustration over the limits that his ASD places on us is almost unbearable. I still may go, but if there is hell to pay when I get back, I am the one who will be paying it. And of course Roo. He didn't choose this for himself and it is not *him* that I am frustrated with, but rather his ASD. Nothing about having ASD is fair to him more than it is unfair to the rest of us.
In addition to that frustration, there are other reminders of how far we still have left to go. He ate his breakfast with his hands, as usual. He refuses to wash them with soap. I dread breakfast every morning as it seems to be when he is pickiest. I am grateful that he ate, and that he took the concoction of supplements that I prepare at every meal for him like some mad scientist. And then, out of the blue, we are at another extreme and my jaw is left hanging open- we are making snakes out of paper and I have gotten the protractor out to show him how to use it to measure angles (we homeschool). I give him a few examples, then show him that a straight line is 180 degrees. He looks up at me and says "or zero degrees". Which is true. I humbly put the protractor down and wonder if I will ever know how he knew that. Sometimes I get dizzy from the speed at which I can go from despair to awe.
I also realize that I have almost come to take it for granted that we can have back-and-forth conversations and that he will actually look at me when he is talking much of the time. Almost, but not quite. One of the silver linings for me of the storm cloud that is ASD is that I have come to see the magic in the mundane. I spent years wondering what his voice would sound like when (if?) he ever spoke. Now, even when he is yelling at me I am in love with the beautiful sound of his voice. Even what seem like such small steps, such as the fact that today he cut with scissors by himself for the first time, are monumental accomplishments in my eyes.
You see, with typically-developing children, these are called milestones that they pass at one time or another and the question is "when". When your kid has ASD there is no guarantee they will ever do these things. In fact, the longer you stare down these milestones the more it seems a miracle that ANY human can do these things. You realize what a miracle every single step is along the path of development and it instills a feeling of pure amazement and awe. It's a bit like flying in an airplane- the more you think about the mechanics of flight, the more implausible the whole thing becomes. I personally get to the point where I wonder when the plane will give up this crazy illusion and plummet to the ground.
Thinking of airplanes reminds me that I am not yet over the fact that on a recent trip to California to visit family and friends, Roo had a panic attack on the plane. I mean a full-out panic attack. Once I got him talked down from it he was still yelling and near panic for 45 minutes. Once we got there I was faced with the question of how to get us home. Like a cold shower, this dilemma brought me back to the reality that although Roo is close to recovered, our lives are still very far away from "normal". Sometimes I can't see straight for jealousy of moms who have never had to contemplate drugging their children just to get them home, only to find out that prescriptions can't be filled from out-of-state. We actually considered having my husband fly to California and rent a car to drive us back home to Oregon. This life can be so absurd. Anyone who wants to tell me what a gift autism is is welcome to pay for the train tickets I ended up shelling out for to replace our non-refundable airline tickets home.
And so the day goes, back and forth. Roo yelling at me over simple misunderstandings caused by his still-delayed language. Roo playing well with friends for several hours without more intervention or assistance than I would expect to give any child. He willingly took part in an arts and crafts activity and enjoyed it for the first time today. While sometimes the smallest of things can trip us up and send the day into a nosedive, it's also the smallest of accomplishments that can stop me in my tracks in amazement. There are times when it feels so isolating knowing how many things come to neurotypical families with what looks to those of on the other side of the looking glass here in autism-land like such ease, but there are also times that I feel almost sorry for those neurotypical parents for not knowing the incredible joy that you get when you see your kid with autism do something that you never knew if they would do at all, even something as simple as enjoying arts and crafts.
