These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.
I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.
It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)
I had already made a big decision about my work life. Part of my absence from blogging is because I’ve been spending the last couple of months rushing to complete projects for existing clients (in a few cases whether they want to or not) while taking on no new ones. My goal has been to greatly reduce my client load by the end of the year, down to maybe two or three who understand my family situation and my priorities.
This will mean a noticeable reduction in our income, though to be honest I wasn’t making as much freelancing as one might think I should be, and certainly not enough to make all the headaches, physical and emotional pressures, and loss of time with the family worth it. Hopefully what I’m reducing things to will strike a decent balance of getting some income with minimal stress. If not, we’ll re-evaluate again.
Knowing in your head that things have gotten out of control is one thing. But sometimes you need someone to come in and make it clear and real to you down in your gut before you really get it. Last Tuesday, the J-Man’s OT – Mrs. Jamie – came out with his teacher to meet me at the car when I came to pick him up from school. I had a feeling she wasn’t coming to tell me something great.
They have become very concerned about his auditory sensitivity and that something about his auditory processing is likely causing him all sorts of problems at school. And what seemed to be him calmly sitting in group or in another activity may really have been him shutting down and withdrawing. (With him, this really can be hard to tell sometimes.) It’s getting to where it’s affecting a lot of things at school.
At one level, this isn’t news to us. His sensitivity to certain sounds and environments has gotten worse and worse lately. But I guess I could remain in some level of denial about it because we’re home so much, and here we can control many of the variables he struggles with and keep him at least a decent part of the time within an auditory comfort zone. In public, that’s not much of an option anymore.
She suggested an evaluation with an auditory processing specialist, looking at resuming therapeutic listening, coming up with a new sensory diet for him, and examining everything we can between school and home to consistently address these issues. As with many medications, we can build up a tolerance to them over time. This can hold true with sensory diets as well. The J-Man has built up some level of immunity to their benefits it seems to where the things we were doing (weighted vests, etc.) don’t really do much for him right now. So, we need to start over with that too.
That evening, I found a place to myself in the house for a few minutes, burst into tears, and felt sorry for myself for a while. I kept thinking, “Oh, God. It’s like we’re starting over.” I self-medicated with a lot of chocolate. This is just some of what I do to cope.
While all of this is still hard to get any perspective on at the moment, I am very thankful that both his OT and his teacher were straight with me about where he is. They respect him and us enough to give us the information we need – accurate and unfiltered – and they always have his best interests at heart when they do. We know we won’t be going at this problem alone.
I know they read our blog, so I hope they don’t feel anything negative about me describing how I felt after our parking lot meeting. This is no reflection on them because they are amazingly skilled, thoughtful, kind people who love the kids they work with fiercely and completely. All this is about my personal stuff and how I deal with stresses like this. This has been a hard three months, and moments that clarify exactly where we still are remain hard for me to work through. But I’d still rather have all the important, accurate, honest stuff out in the open so we can work to get the J-Man what he needs because that’s what all this is about.
Lately this part of our journey has felt more than a little lonely and isolating. It often feels like we have to pull back from the world more and more and entrench ourselves in the process of understanding and addressing the needs of both our kids. Dale Jr. is still a baby and seems more or less within whatever the developmental milestones are for a six-month-old. We threw out those charts so long ago that I don’t even know what they are, but intuitively it seems like he’s doing the things most others do at that age, which includes being very clingy and completely averse to separation from us for more than a nanosecond, but that’s another post. All this is to say that I could still pick up a book or talk to most parents and get a pretty good handle on where we are and what’s going on with him.
However, as the J-Man’s needs become more and more complex, clearly we aren’t keeping up. Beyond feelings of failure, or at least serious inadequacy, the paralysis I’ve been feeling about how to get out of this mess of work, health problems, other stresses, etc. only seems to increase the more I think about it. It really is like we need to start over.
As isolating as it can feel after your child is diagnosed as autistic to put your old habits, dreams, preconceived notions, etc. aside and develop new ones based on what your children and your family really need, I think this is an inevitable step we all have to take. The part I didn’t really get until now is that this may be something we have to do periodically for the rest of our lives. Even after settling in to a post-diagnosis life, we develop a new set of dreams and notions about what will happen next. Then a new reality comes into being, and we may have to again put our existing ideas aside and develop new ones all over again.
This perspective frankly scared the hell out of me when it first came to me. Sitting here writing this, it feels both like an incomprehensible challenge and an amazing opportunity. Perhaps it’s a lot like churning up the soil every year, planting new stuff, and seeing what the fruits of our labors bear. I guess now we’re in a place where we first have to clear the land of all of our old brush, weeds, and debris and really give ourselves fully to this life. Easier said than done.
A couple of times last week, we noticed the boys next to each other on the couch touching their hands together. That was so unbearably sweet and beautiful. Tonight, the J-Man tried to help me feed the baby (pushed my hand with the spoon in it toward his mouth). And there are more of these moments happening every day. These are huge, incredible, amazing triumphs. All of them brought tears to our eyes. Our kids possess such incredible gifts. In order to help them express them as completely as possible – and to help us appreciate every part of that journey – we need to make some serious changes around here.
I don’t say all of these things for others to pity us, which we don’t need anyway. The reality is that this is hard. And that’s neither good nor bad; it just is. But we are learning again and again each day through the beauty and wonder of our sons that what is challenging is also taking steps into a future filled with opportunity and marvels beyond our comprehension. Again, easier said than lived out, but what wonders in this world come about in any way other than that?
I guess the key is to allow as much room in your life as you can for all the challenges and to help your kids make the most of every opportunity. So that’s what we’re going to try to do in the best way we can.