Monday, April 11, 2011

It Only SEEMS Like I Haven't Been Blogging - April 11, 2011

No, really, I actually have been blogging. I just haven't hit "Publish Post" lately. I don't know why I'm feeling skittish again - but I am. I have a few posts that are more emotional or that discuss having a child with special needs, they're just not ready to come out just yet. But maybe soon.

Also, we just finished a very long Spring Break week of no preschool. For some, Spring Break is an exciting time full of fun and parties and perhaps even a trip. For us, it was a week with no break at all. Fewer therapy sessions (private PT and speech, but that's all). And lots of racking our brains figuring out what to do to entertain a kid with a short attention span (but what kid doesn't have a short attention span?)? It makes things oh so much more fun that I have to carry her most places and she's over 30 pounds now.

So, for example, going to the bouncy castle place one day meant me carrying her from castle to castle, trying to help her climb the biggest one (of course that's what she wanted) while neurotypical older/bigger kids raced all over us, trying to keep her from knocking other kids down or being knocked down. Playgrounds? She'll sometimes happily swing for a half hour - other times she wants to switch the swing she's in (I wish I knew why) over and over, will cry and cry until I take her out of the swing only to point back at it and sign please and go in it...lather, rinse, repeat. I envy every parent who can take his/her kid to one of these places and sit on a bench while the kid...plays.

We did find that a local "work-and-play cafe" is VERY welcoming of my kid and I plan on taking advantage of their services in the near future. A year ago I wouldn't have even considered checking it out but she IS more stable and more communicative and more social thanks to preschool, and she took to the playspace and the staff there immediately. So perhaps that will offer some relief for the summer.

The...summer...with no preschool for two long months. I can't even wrap my head around it. Camps don't work for us - she's either not disabled enough (she doesn't need medical care or nurses, she wants to be playing) or too disabled (most camp offerings). Give it a few years and we'll find our way through that dilemma, I'm sure, but this summer creeps and crawls its way toward us laughing, "How many days can you go to the pool, really?" The pool, the library, the farmers' market, walking around town...and then I'm not sure. (I have a driving phobia - isn't that CUTE? - that I'm working my way through and improving upon every single day, but it still limits some of our options.)

I didn't mean to get into all of this today. I just meant to assure you all that I'm writing, you just can't see it. You all = all...10 of you? Ah, the blogging life.

1 comment:

  1. Marla,

    Sometimes when you don't mean to post/write something that is tough to plan out, it just comes out. This did just that, and it was honest.

    I don't envy you. At all. And I don't feel your pain. I have no idea what this must be like. I don't have any kid at all, so I have no idea what having to entertain a kid all summer is like, let alone one with special circumstances.

    While I am not a religious person, I've finally realized I'm a pantheist. And so I believe everything is linked and the universe and the earth and us and all the shit all twirls around together bumping into each other and affecting each other. I think that the practicalities of you and Ruby's lives are difficult - but somehow, someway, the interconnectedness to something is going to really matter someday. That sounds all kinds of looney and I don't really know what I'm talking about, but I still believe it.

    You are one of my heroes. You face adversity and you just do it. There's no use in crying, says Ole Golly, and you know it. And Ruby will learn this skill from you and she will be so strong for it.

    Love, Karen