Thursday, October 20, 2011

Then Comes Tuesday

Things have shifted since I wrote about how I hate Mondays.

Daniel and I went on a trip that (among other things) served to distract me from how things were going at home, while also forcing Daniel out of his comfort zone (where he tends to scream less in the short term). The time away from home also had the unexpected effect of helping me to remember where my true priorities lie: Daniel and Jaymz—my family—is most important; everything else can wait.

I have a lot I'd like to write about, but I'm finding it hard to find a moment in the day to sit at my computer for some quiet "me" time. Perhaps because of the upset of the addition of Occupational Therapy (OT) to our schedule, Daniel is needing my more focused attention these days. (While I can crochet while facing and looking at him, I cannot do the same with typing.) I'm finding myself so exhausted from the events of the day that, like I did in the early newborn period, I nap when he naps.

I've also been working hard lately at being more aware (and in control) of my expressions of emotion in his presence, especially my frustration about this situation. I've learned a lot about how his brain works, and I'm trying these new techniques to relate to him on a minute-by-minute basis. It's very tiring, but I feel like I'm starting to get the hang of it, and I think (I hope!) it's working. I'll have to save more of that for another post.

I mostly want to say a huge thank you to everyone who reached out to me after I wrote about our Mondays. I've been overwhelmed by your love and support, and you should know that I read your comments again when it gets to be too much to handle here. I'm not feeling quite so trapped in Never-ending Mondayland right now. Rather, it's beginning to feel more like Tuesday morning: it's not the very beginning of the week anymore, but there are still many days left to get through until the end of the week is finally here.

I think one of the major things that has shifted since I wrote that Monday is the way I think about Daniel and his SPD. I feel like this is one of the lessons I'll have to continue to learn over and over: that re-framing a situation in my mind, while it doesn't actually change the situation itself, can have a profound impact on the way I feel about it and also how well I can cope with it subsequently.

The main thing I've shifted in the way I think about Daniel is that I'm now allowing myself to think about him as having "special needs." Seeing him (and our life) in that context is helping me to adjust my (perhaps previously unrealistic) hopes and expectations for us both. There was something about the comments on that post that helped me to re-frame it this way and also that helped me to give myself permission to begin to let go of my preconceived notions about what our life was supposed to be like at this point. For instance, I had hoped to be done with the constantly demanding stage of infancy by now, since chronologically (and also developmentally in a lot of ways) Daniel is solidly into his toddlerhood. Neurologically though, he is not at that point, which is certainly atypical and also very special and challenging in a unique way.

I'm finding that perhaps the most difficult thing about being Daniel's parent is explaining his SPD to others and then feeling understood. This is one of the things that has been frustrating for Jaymz and me from the beginning, because when Daniel is around people he's not extremely comfortable with, he acts completely differently than he does at home. He acts quiet and reserved, often falling asleep in public places (from being overstimulated, though he won't show it). He rarely talks and even more rarely does he scream and cry like he does at home. It's these times when strangers' comments about him being "good" upset and anger me the most, because in the back of my mind I'm thinking, But you wouldn't be saying my baby is 'good' if you saw him at home! And he is good. All the time.

This maddening experience (of our life looking a certain way from the outside and being a very different way in reality) is one of the things I wrote about in my account of Daniel's early diagnosis and intervention which is published in Hartley Steiner's book Sensational Journeys: 48 Stories of Sensory Processing Disorder. I don't know what the solution to it is, except to keep on talking and writing about it and hope I feel understood some day, so that's what I'll be doing. I'm already making more connections with other parents of sensory kids here in Portland as well as on the internet. I am extremely grateful for the empathy and companionship I've found in that community, as well as the resources and other support.

Now if I could only find a (very) part-time nanny who would have enough patience and stamina for Daniel, I'd be downright well off, support-wise. If you know of anyone, please send them my way!


  1. I am so glad that things are looking up for you. I guess this means that you need to get together with NPNers more often since we all have such awesome energy :)

  2. Wish we lived closer! We're not quite sure if M has SPD in addition to autism, or just a lot of sensory issues as a result of having autism (the line seems so fine), but I hear what you are saying. We get similar comments about M, though he does tend to have the meltdowns in public, very big ones. But, the people saying this are watching him in small group settings that we carefully construct to be easier on him. In addition to the "being good" comments, we get "but he's so smart!" and even "oh but he's cute!" ARGH!!!

    I'm glad that you're connecting with other families. Good luck on finding the nanny!

  3. Amy! What a great post. I really feel this myself. Though our issues is mainly at night, Iris is special needs in a way because her brain is still neurologically doing what a preemie/newborn does with the waking. And her special needs consume our family too and always have. And you are so wise about needing to be able to focus on just family sometimes. And it is so hard to feel invisible for your struggles and effort when everything looks perfect when people are around. I wish I could share my very part time nanny with you. You are brave and inspiring.

  4. Thanks, Amanda!

    @Maya: I wish we lived closer, too! I can definitely relate to those comments, and it's so frustrating because yes, of course those things are true (and wonderful!) but that doesn't make it any easier to get through the day, you know?

    @Moorea: Thank you so much! I definitely think your challenges with sleep fall into the "special needs" category as well. I wish we lived in the same city so we could nanny-share! Sigh...someday we'll all move to that island together, right?

  5. This is a welcome update. I expect you'll have many ebbs and flows still to come, but it's good that you're finding new perspective on what's happening. I agree with prioritizing your family above the other things that can wait (and they can wait), even though it's hard to (have to) make those choices.

    I wish I could find you a part-time nanny, too, and that we can all move to that island.


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