Easter.........
Tiring end to a loooooooong week. While Saf didn't have school this week, it was still a busy one.
We had a follow-up visit with the dietitian at Regional Center. Saf did really well, Nix went into a meltdown at about the 45 minute mark. Saf was able to ignore Nixi's screaming for about a half an hour more and then they both started to go. So, we promptly got the heck outta dodge. The dietitian had some good suggestions for introducing probiotics to Saf's system as a means of regulating her bowels for the long term. We're still doing the daily Miralax and its working, but if possible it would be great for her body to do what it needs to do naturally.
We had a visit from Nixi's OT (occupational therapist) that was totally underwhelming. If you can recall, well over a month ago she said she was going to put together a "sensory diet" for Nix that would include balancing carbs and protein every two hours with sensory activities in between snacks. What'd we get....a crappy list of snack foods that mix protein and carbs, no sensory activities, and no schedule. Really? Its ridiculous. Needless to say, we're totally disappointed and frustrated with the lack of "action" and initiative we're seeing.
The rest of the week was a rotation of Burger King play area and hanging out in the front yard in the bouncer house.
Nixi's birthday was wonderful. We learned from Saf's birthday that we needed more visual supports throughout the day, so we added things to the visual schedule like when gifts would be given and how many. It worked like a charm and it was a blissfully meltdown-free day...and Nixi had a wonderful time! Thank you to all of our family for the wonderful gifts, $$, and love. Really helped to make it an amazing day for both girls. Easter was a little dicey...but we expected that with it being the day after the birthday hoopla. None the less, another fun and wonderful....despite the meltdowns. Make sure to check out the video!
This week I want to touch on something that is currently proving to be a tough one for Mike and I....level of functioning. Kiddos with Classic Autism (and all spectrum disorders) vary so greatly, so one of the specifiers within the diagnosis addresses level of adaptive functioning. Those level of functioning are high, moderate, and low. Lately we've been getting a lot of comments from people like, "So Nixi is the higher functioning one, right?" Its a benign comment asked solely for informational purposes, but its like a little dagger to the heart. If we say yes, then what does that make Saf?
Professionals that have worked with Saf have always said that she was unique and that she is unlike any other children they have worked with. While she clearly is confused about social interactions and nuances, she craves them. She is attuned to others emotions almost on an empath level. You cry, she cries and tells you "all done sad." She has always exhibited acute performance anxiety, which infers a deeper social understanding. She gets it that if she can't do something or fails when trying that others will see that and she is horribly self-conscious. She is self-conscious! That means that she has a complex understanding of herself in relations to others. From that perspective I think she's exceptionally high functioning in the Autism world. Unfortunately, due to those very qualities as well as her verbal apraxia and motor dyspraxia, her adaptive functioning out in the world is moderate. If she trips she immediately scans the room to see who has seen her. If someone asks her if she's ok, they've confirmed that they saw her and she begins to scream and cry out of embarrassment. When Mike and I are laughing at a joke between the two of us she cried and screams and says, "all done silly" because she doesn't know why we're laughing. To make it ok we have to stop laughing and she has to fake laugh so that she feels like she's part of the joke and not the joke itself. Because she is anxious all of the time, she must employ a number of rituals to help her feel as though she has some control over her environment. These rituals often prevent us from leaving the house on time, prevent her from functionally playing with other kids, and absolutely torment her.
Nixi is exceptionally bright, her speech is articulate/intelligible and her vocabulary is expansive. She walks right up to you and says, "Hi, how are you?"...then she turns her little self around and walks away. She has no clue that she needs to wait for a response, nor does she care much if you give one. If you ask her how she is, your talking to the back of her darling little noggin. At this point Nixi can walk right into a room full of people and, as long as there are things to touch and explore, she never looks back. There's no scanning the room for friendly or scary or familiar faces. She doesn't care who's there, she's not there to see people...she's there to see things. She'll bring you toys by the armful, only to walk away just as abruptly when she's done with you...weather your mid-sentence or not. When I cry she laughs, sometimes patting my face with her hands to play with my tears. If you ask her questions that are out of her "schtick", she looks at you blankly and/or walks away. I could go on, but you get the idea. In the Autism world, she's pretty typical "autistic"....she's like the other kids that people like our BIA, Heather, works with. From an adaptive functioning standpoint...she's able to communicate her basic needs (although, unless its a highly motivating desire...she's generally not spontaneous with routine requests, we have to prompt her repeatedly and often the answer is a repeat of what we're just said...echolalia), she isn't motor dyspraxic so she is capable of doing things like brushing her hair and getting dressed (of which she does neither because they aren't highly motivating tasks), etc. From that perspective....sure, she's higher functioning. Its the social areas where she's lower functioning than Saf. If she isnt able to be empathic to other's feelings and needs, who will be her friend? If she can't retain her focus because something across the room looks more interesting, how will she apply that amazing intellect that we know she has.
I've said it before, and I'll say it again....Saf has the motivation but lacks the ability and Nixi has the ability and lacks the motivation. I'm not sure what get you farther in this world....intelligible speech and an amazing vocabulary or a really great smile from someone who is genuinely thrilled to see you? Both of my girls have a number of challenges now and in the future. They both have areas in which they are high functioning and lower functioning. So, while its a benign questions, its a very complex question with no definitive answer...and who the hell cares, anyways. They are who they are, they are where they are, and they will grow and change every day!
With that, enjoy the video and...............adios! I'm outta here, I spell checked but that's the extent of it so pardon any other errors and remember to check in next week for our last "parent post" before turning the blog back over to the girls.
Sarah
Nix's birthday montage...we kept it very low key in anticipation of Easter being the next day......
Easter: Part I..BASKETS
Easter: Part II..THE HUNT!
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