Sunday, June 7, 2009

A day in the life... pass the valium, please!

A day in the life... pass the valium please

Some wandering reflections on today...

This morning was another battle about clothes. I'd say we have one of these every week at some point or another. She had an idea about what she was going to wear but had not laid it out. That is usually a really bad thing. The Doctor and I were out last night, babysitter didn't make sure to ask. Well, this morning I invited Maddie and Ella to come out to Starbucks with me for chai. Both girls seemed a little clingy after I had been gone a lot yesterday. Ella couldn't find anything that felt comfortable. I put up with the searching, the whining, the frustration, and the sobbing. I remained rational and supportive, and tried to give her options. Even looked in the dirty laundry for her. It got later and later. I got to a point where we needed to leave. I gave her a choice between two things, she refused. I told her we needed to leave, she ratcheted it up a notch and started throwing clothes and begging me to not leave, and generally hyperventilating and gagging on her sobs. I was trying to get cereal for Teddy and Annelise before we left, and my hands were shaking so bad from the ongoing auditory assault and my blood pressure was so high that I dropped and broke several things.

We finally got in the car. She and Maddie started in on each other with the poking and the tattling. Ella was upset and not stable, and always takes it out on some child. I thought I was going to go off the deep end. I grabbed out my Rescue Remedy (herbal supplement used for shock victims, actually), and put on some Steven Curtis Chapman. Loud.

Finally, some peace.

Ended up just going through the drive thru because it was SO much later than I expected. Got to church, everything was just ducky for Ella.

I was shell shocked for most of Sunday School class. I asked for prayer for The Doctor's business trip (each week 3 days, sometimes more), prayer for Ella's dental appt which never goes well because she freaks out on the anesthesia and then freaks out about the tingly sensation when the numbing meds wear off. A woman in my class mentioned that she wished she could help me, that I sounded overwhelmed. I told her to just pray for me. Another friend mentioned that she and her husband wished there was something they could do for me (she had been in the Sunday school class) and I asked for prayer for my ability to endure and cope, stretch and grow.

I took Ella on an errand to the store to get cucumber and onion around 3pm. She wanted to bring a book into the store. I was in a hurry, I told her no. We needed to move fast, she couldnt read while we walked, and I didn't want her to lose the book. She got back into the car, locked the doors, crossed her arms over her chest, and glared at me. I counted to 3 and she got out. We got in the store and she yelled at me about the book again, and ran into the bathroom. I got my produce and went after her. Had another discussion about how we needed to move quickly, and said I wanted to get garlic bread. In the garlic bread aisle, there happened to be flip flops for sale, and she asked if we could look at them. She was happy to find several that were comfortable and I told her she could have them.

Her love language is gifts. She told me that she knew I loved her because I bought her shoes. All was rosy.

I took the opportunity to tell her that I could feel her love when she said I did nice things for her, or cooked a good meal, that what speaks love to me is words of affirmation. She apologized for an incident on Valentine's Day that I dont remember, but I forgave her for it. One nice little teachable moment today.

I left for the choir party with repeated ritual "hug kiss nosy", she must have asked 6 times for it as I was trying to leave.

She did not call me while I was gone to ask me to come home. Yay! Good thing, because I was trying unsuccessfully to not have a breakdown. Had a good emotion filled talk with a wise and wonderful friend. Wish I hadn't cried around other people, but what are you going to do, you know? They were busy, and I didn't mind sharing with my friend. I barely could even enjoy being out of the house today at the choir party, just so overcome with the yelling and rage and trying to make sure I didn't flip out on her while she was melting down. Why is it so hard to act like an adult around her? I wonder if other moms of Autism spectrum kids have this issue.. I think many moms of teens do!

So, the end of the day, and I am still processing it all.

This whole brand new perspective on Ella with her official diagnosis, learning about Aspergers and how I have to bring my "A-game" every minute so I can avoid meltdowns just kicks my butt. I know with her sensory meltdowns, if I can see them coming, I can avoid them. If other 3 kids aren't needing me, we aren't in a hurry, etc. We still don't really have a sensory diet. I hear other moms talk about how their OT gives them a sensory diet. I have rough outline, but feel like I would need a weekend away to match up what OT recommends with activities in the Out of Sync Child books and create a sensory diet for her.

If I get bad sleep especially, I am really short tempered and snarky and don't really see her Aspergers, what I see is a defiant 9 yr old who can't act her age. For all the world, she seems like your average 9 year old, and there are days when that's all I see or want to see too. I get SO frustrated at her, and she is just being who she is. I really JUST read about uneven development in Aspergers/Autism and see now how that is what is really going on. Years of expecting much more out of her and and belitting her to act her age, now I know she has a different maturity level trajectory. But I dont know what to expect of her now. When her 6 yr old sister is in many ways becoming more mature, what do I do with that? This past year, they have both sorta been age 6. But Maddie is growing up and Ella, well, isn't. I am just learning about the whole concept and how even though Ella is 9, she has a high school level reading ability, but a K4 emotional maturity level. She's all over the place. This is an aspect I need a lot of direction with from other moms of kids on the spectrum. She just CANT modulate her emotional reactions. She wont take responsibility to get herself together to do well, and when I see her melting down and offer suggestions of things her OT has told her to do when she starts feeling stressed, she refuses. I don't really believe she is "old enough" to get it.

Also, Maddie is starting to understand there's a difference. She is embarrassed at Ella's sensory meltdowns, even if they are just at home or in the car, especially when they are in public. She is not understanding why we tolerate older sister's fits, etc. Last night I saw several kids books on autism spectrum.. for Aspergers and for Autism. BUT we haven't talked to Ella about having Aspergers. Dont feel like I can get a kids book on it to help Maddie till we tell her.. With her emotional maturity being pretty delayed, like 5 yr old level, it doesn't seem appropriate to talk about it with her. I don't like the whole label concept being put on my child for her to understand being "different", yet books I'm reading recommend talking about the differences in the way you think and process with your child. She loves therapy, doesn't mind having all this testing done, I don't think she thinks anything is amiss. Its a quandary.

Thanks for listening. I feel a lot better just getting all this out there.


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