Road Map to Holland, by Jennifer Graf Groneberg.

I didn't expect this book to resonate with me as deeply as it did. I was interested in her story, intellectually - it is why I wanted to read and review it, but I didn't know whether or not I would find common experience with Jennifer. SPD is sort of its own thing, as is Down Syndrome. Mothering of all sorts has its challenges, of course, but in my every day life I find the things that LP deals with to be so unique & unlike anything I expected that I am accustomed to feeling isolated from other mothers.
I didn't expect her honesty to resonate so loud in my heart - the anger & frustration I'm feeling now all rose up as she recounted her own journey into mothering Avery. The shifting of expectations - not wanting to expect too much, nor too little - having no guarantees of future success - living with all the uncertainty and yet doing everything you can for your kid, because that's what mothering is - all this left me feeling breathless, realizing my own anger at our situation, anger at the disability. A part of me is still waiting for life to return to normal, a part of me still denies this SPD will control us - though it is clear from the rate at which I painstakingly cut tags out of %100 percent organic cotton clothes that it really does and will for the foreseeable future - I often plan my days as if SPD is not an agenda item - it is on Mondays menu for therapy, the weekends for writing about & every other day on an as needed basis. I'm just not being realistic. Did you read my post at needs new batteries today? This thing is kicking my ass at the moment.
I saw it clearly in Jennifer in her first days and weeks after the diagnosis & today I see it clearly in me, the denial, the fear, the coping, the taking back lost ground, the scrambling look for successes. SPD is an every day agenda item.
It defines us and controls us & yet it does not and will not. Just as Avery shoots himself down the water slide, so did LP run skipping right through the line of the leaf blower today! He melted down upon leaving the toy store (sad goodbye, probably aggravated by fluorescent lighting, which seems to set him off), but also has incredible success on the potty (kind of huge news as his concepts of in/out/on were still developing late & also just plain on regular poor body sense that comes along with SPD).

He is much bigger than this & so are we. Of course, I seemed to know that about every other family that I've known with children with special needs, it just took me a while to feel bigger than it & also know sometimes, I won't feel bigger than it. I'll feel fenced in, but I'm not. He's not.