PEA SOUP

Happy holidays to everyone out there!! So we've been here in Texas for two months and things are going pretty well. The schedule is pretty crazy at times but, so worth it for Oliana. She now gets therapy about 10 hours a week, unlike Las Vegas where she got 1-2 hours a week. When she goes to school she'll get more than double that which is very exciting! She receives outpatient therapy 3 times a week, speech, occupational, and physical therapy. She has a vision teacher, Miss Judy, who comes once a week. And an Orientation and Mobility Specialist, Miss Toni, who comes once a week. And a physical therapist, Miss Theresa, who comes every other week.
Interestingly, I had a discussion with Miss Theresa today about Oliana's constant self stimulation and her inability to self regulate. I have questioned Oliana's behavior to numerous therapists and doctors for the past year or so. Only to be told repeatedly that her head shaking, oral preoccupation, hand flapping, repeating of words, and inability to initiate speech were all due to her blindness. Really, in my heart, I did not believe this to be completely true. I've always felt that there was something "different" about Oli. Something that cannot be as easily explained away as just saying it's because she's blind. I've learned of many of Oliana's peers that do not display the behaviors that Oliana does. Most of the day, if left to her own devices, she would spend her time in her own little amusement park that she has created in her head and with her body. This involves numerous repetitive behaviors such as those I described before. There is lots of head shaking (our little Stevie Wonder) which I do know is a blind trait. Lots of hand flapping and touching her face. Kekoa has tried to explain to her that she has arms not wings and she is not a bird and will not fly away despite her persistent flapping. She will repeat almost any word said to her, if she's interested but, will not initiate any kind of communication. If she wants to eat, drink, sleep, play... she will not say any of these things by herself. She will repeat the word but, this involves me running through the whole list of activities that could possibly be the answer to her frustration. She spends the majority of the day crying and throwing tantrums. Something as simple as being done with dinner sets her off into a whole meltdown. This usually means her throwing her head back against the high chair, slamming her feet down and throwing whatever is left on plate onto the floor. Simply because she is unable to tell me that she is all done eating and I haven't properly developed my telepathy yet. Usually as soon as I ask her if she is all done she will say all done and then she's better. Usually...
So today when Theresa came for her PT visit Oliana was having an "Oli day" and being completely unruly. She started telling me about this disorder called Sensory Processing Disorder. It's kind of like autism but, is not autism. Kids with autism have sensory processing problems but, just because a child has sensory issues does not mean that child has autism. Basically it involves everything I described before. Oliana craves lots of sensory input. She loves big movements, spinning, being thrown, weird tactile stuff, messy play...ect. Anything that she can get the most information from. Being blind, this does make sense. I think I learned somewhere that people get more than 60% of their sensory stimulation from vision. Obviously since she doesn't have this she seeks it out in other ways. I tend to think that Oli might be on the end of that spectrum, craving even more than the average child. It's so hard to tell because she is blind but, something is just different with her.
All this means is that we need to go to yet another specialist to have her evaluated for autism and for sensory processing disorder. Sometimes I wish I was the kind of mother that could just turn a blind eye and say "Oh she does those things because she's blind". I just can't do that to her though. As much as it completely breaks my heart to think that there might be something else going on, I have to do right by her. This means acknowledging who she is and getting the professional help she needs to make her the best person she can be. If it is a sensory processing problem then some of our techniques need to change and the way her therapists view her need to change. The way I see it now, the blindness is really a small hurdle for her to overcome. Myself and her teachers really cannot teach her how to navigate and learn in a world full of darkness until we get her out of this little world that she's built for herself. We need to address her behaviors first to be able to reach her to teach her all that she needs to learn. She can't possibly sit in a classroom for 6 hours a day and learn if all she's doing is shaking her head and singing to herself.
So... onward we go. Learning new things about Oliana and trying to do the best we can to prepare her for school next year. She really is very bright and loves to learn. It's just a matter of doing it in the right way to be able to focus her attention. And despite her seeming to be possessed by a demon some days, she can be such a sweet heart. Sometimes you forget you saw her head spinning and pea soup flying out of her mouth just 15 minutes prior.