Monday, November 28, 2016

Monkey bars

Years of hard work paying off. Ayden Jane has been working on being able to do the monkey bars for years. Seriously. She would have occasional success and get 4 or 5 bars... This is a long set of bars, 13 all the way across.  She has been working on them each day at school and apparently mastered them! She was so proud to show me.

Monday, November 14, 2016

PWS Pause

Ayden Jane is doing so amazingly well .... most of the time.

It goes like this. When she has had enough sleep, enough exercise, the right food, proper supplements, the right dose of meds, completely healthy, not too much to process ... she is quick witted, kind hearted, funny, deep thinking and an overall ray of sunshine.

An example of her wit would be last night. I told her I was going running but I stopped by the computer to shoot off a quick email. She called, "mom, I thought you were going running." I said, "I am." She giggled and said, "that doesn't look like running to me!" Then Kayla came in the door and I invited her to go run with me. AJ didn't even look up from the page she was coloring and said, "Well we all know that's not happening."

I suppose I should not encourage the sass and it may come back to bite me one day.

Most of the time, Ayden Jane operates in near top form and although it is a lot to balance, we have become quite good at maintaining the balance needed. At times, though, she just can't follow what you are saying or there are just too many things going on for her to process quickly enough. She has begun to recognize this for what it is. In the past, she would just argue with you and claim that her lack of understanding was your fault. Or just stop and stare, as if she is waiting for her brain to catch up to real time but it can't.

A few days ago I was trying to explain something to her when she was a bit tired. After I repeated the same thing for a third time and was getting impatient with her she tells me, "I hear the words coming out of your mouth but my brain isn't processing them." Wow. What a great description. I have also heard, "Can I say it one more time, please? I just can't get it off my brain."

These PWS pauses/glitches in her neurology are annoying. They make some days a challenge. If I put a positive spin on them, they also show how amazing Ayden Jane is thinking most of the time. They keep me from taking the other 90 percent of her day for granted.

Monday, November 7, 2016


I have gone back to work full time which has been a big adjustment around here. Well, a big adjustment for most of us. I have been leaving for work before Ayden Jane is even up in the mornings often times. I don't get to pick her up from school. It's strange.

In all honestly, Ayden Jane gives Gary a really hard time. It's funny, in a way. Probably not to Gary, but still. Bascially, I have been primary care giver for as long as Ayden Jane can remember. Gary has worked a ton of hours and mostly has played with Ayden Jane and spent great time with her in a sort of... give me a break role. Ayden Jane simply just does not yet trust that he has any idea what he is doing. I mean, want to play a board game? Dad's the go to. Want to swim out in the ocean to the deep, deep? Dad is happy to take charge of that. Need someone to be spoiled rotton? AJ knows Dad is always there.

It has been a few weeks and it seems they are begining to find their own rhythm. Hopefully he is no longer hearing, "that's not how mom does is" too many times each morning getting ready for school.

Aside from the adjustment, Ayden Jane has had a few pretty hysterical comments lately. I figure I really need to start writing them down so here are two Ayden Jane 'quotes'.

Ayden Jane took the CogAT testing. It is a test to determine eligiblity for the gifted and talented program. Honestly, it makes no difference to me if she even takes the test, but I just let her roll with it and give it a go. You know, sort of like practice. After it was done she was talking about it one evening.

"I finished one section and the directions said to go back and check your answers so I erased them all but then ran out of time to do them again." True PWS brain moment. So very literal.

Saturday we were riding over to grandma's house to help with a few things. Ayden Jane started talking about Grandpa (who died last summer) She asked, "How did they know Grandpa was dead?" I answered, "well, he wasn't breathing so they had to go to the hospital." Then Ayden Jane asked me again, but answered her own question with, "Did they know he was dead because all the light went out of him and only darkness was left in his body?" She just gets things on a different level than the rest of us.