Manual, Please!

Today I took Jenna to the eye doctor and returned home exhausted. Little miss boss did not like being there and had a major meltdown in the middle of her TWO AND A HALF HOUR LONG appointment. I'm beginning to wonder if I can get through these alone anymore; she's getting a lot bigger and a lot tougher.

I came straight home and started to google blogs of other stressed-out parents with special needs children; I read what they had to say and felt somewhat comforted.

Jenna's world is changing lately. I think it's becoming more confusing and emotionally difficult for her, which makes me feel very helpless. A wise friend once said to me, "at least she doesn't know she's different." Maybe not then, but that's where the change is occurring.

I think she knows.

And I'm sure it bothers her.

For example, when we came out to Texas, I was really excited about respite care opportunities so we could do things with Hannah that Jenna would not enjoy while Jenna went to play. There's a great special needs respite care organization here, but the problem is this: There are usually only other special needs children there and Jenna won't really play with them. However, when we take her with us out shopping, or to a restaurant, Jenna goes up to the kids we come in contact with and tries to talk to them. If they ignore her or tell her to go away (which breaks my heart) she starts to cry, which often escalates into a full-blown, drop to the ground and scream at the top of your lungs meltdown. She's been known to ask, "why you be mean to me?" which makes me think she's aware she's different, but strives to "fit in" despite that, even though she asks the same questions over and over again or says things that just don't make any sense. She's socializing the only way she knows how.

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When I think of this change from blissfully ignorant to oh-so-aware, I'm reminded of her seizures. How? Well, some look much worse than others and are much harder on her body, but she is unaware of them as they happen, so they look like they hurt but they're mostly just hard for us to watch and for her to recover from. With other seizures, she's fully aware, crying and asking for help. These might not be as physically threatening, but they're painful and emotionally difficult for her and for us. Same with her new desire to have friends without disabilities - it's as if she feels she needs them so they can carry her through whatever it is they do together while they're playing because she knows she can't do it alone. She simply doesn't know how. But she's aware she's different and it bothers her.

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And it's just so hard to know what to do for her.

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Her birthday outing went awry for the very same reasons mentioned above. She tried to play with two little girls and they shied away from her and eventually, they left the play area. This really, really hurt her feelings. It's like she knew they didn't want to play with her. She cried and cried, was totally inconsolable no matter what we tried or how goofy we got in our desperate attempts to make her smile, and Craig ended up carrying her out of the restaurant - still shoeless - because she was so hysterical. :(

So we ended up eating her cupcakes at home the next day. Much, much better idea.

Mmm... yummy!

We sang her "Happy Birthday" and helped her blow out the candles. She seemed okay with that, although she got nervous with us all singing at once -- hey, I'll take that over a meltdown any day! But it makes me wonder what we're supposed to do next year. Do we risk the let-down of another party-gone-wrong? She obviously doesn't enjoy herself when that happens. Our goal was to keep it simple this year, but apparantly simple wasn't enough; home ended up being the best option. Oh, well. We tried.

I guess time will tell. I wish we had a manual for this stuff.

Meanwhile, Hannah enjoyed Jenna's birthday very much.

Particularly the cupcakes.

:)

And Cohen opted to hang out with some buddies.

How cute is this?