Tiddler had an OT appointment today. The therapist attended her playgroup that is run by the local family centre for children with additional needs.
She was really pleased as I explained how someone seems to have "flicked a switch" and so in recent days Tiddler has been responding to pain almost without fail. The OT observed it herself as Tiddler rolled off a mat and hit her head off the floor and burst into tears. A few weeks ago she wouldn't have flickered a response. Amazing.
I also reported how her head banging seems to have improved, I almost didn't want to say this out loud as I am worried now I have cursed it and she will return to headbanging with a vengeance! I explained that there seems to be a direct link between Tiddler not wearing her Piedro boots and her refraining from head banging. Weird I know. I don't get it myself, apart from perhaps that having boot-less feet is just not giving her the feedback that my sensory seeking daughter needs so she is giving up quickly.
So why, why all of a sudden are things clicking for Tiddler? The OT didn't know... she said it could be a combination of the OT therapy and exercises I have been doing as well as perhaps her development now being appropriately advanced (although still delayed by approx 6 mths).
There are still outstanding issues- she still arches a lot and bangs toys on her head. Feeding is a massive area of concern for me. More of this another time.
Other good news very recently has been the DNA results from the Geneticist. Tiddler does not have either of the (quite nasty sounding) muscular disorders that were tested for. Relief, obviously- but it still means we are without a diagnosis and still wondering what exactly the future will hold for Tiddler. As I sit here typing now though, the signs are all very positive and I make no apology for enjoying this moment.
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Monday, 6 February 2012
Thursday, 15 December 2011
Sensory Processing Disorder
I haven't blogged for ages, and almost can't bring myself to now.
In the period since my last entry, things had been going quite well. Tiddler had started to eat foods such as toast, strawberries and tomatoes from my hand. She was discharged from the Neurologist last week... She has fabulous bright pink Piedro boots and doesn't mind wearing them.... and she can stand for short periods when wearing them!
A few weeks ago Tiddler had an appointment with the Occupational Therapist. The OT asked us to come back to see her more senior colleague as she was unsure of a diagnosis - Tiddler has always thrown the health professionals that treat her!
On Tuesday, we went back to see this senior colleague. She observed Tiddler playing and moving and concluded fairly quickly that she has a Sensory Processing Disorder. Specifically, she is Hypo- responsive in 3 different areas. In particular, she is under responsive when it comes to the pain sensation. Apparently, this is "extreme". Obviously this is pretty serious. The concern is that she may harm herself and we will not know. She stressed on me the importance of keeping her safe. The cushions on the floor have to stay!
As she uttered these words I could feel the tears coming, I couldn't suppress them. It really feels like one step forward two steps back. I worry that she may have already harmed herself and we didn't know, I worry I have neglected her, I worry I have let her go hungry, I worry that my poor little girl has been living in a black world for the first 12 months of her life and we didn't know.
Part of the problem is we don't fully understand what it all means: both for now and the future. I have started reading a book that was recommended but I will admit we are in complete shock and struggling a little to accept this latest development.
In the period since my last entry, things had been going quite well. Tiddler had started to eat foods such as toast, strawberries and tomatoes from my hand. She was discharged from the Neurologist last week... She has fabulous bright pink Piedro boots and doesn't mind wearing them.... and she can stand for short periods when wearing them!
A few weeks ago Tiddler had an appointment with the Occupational Therapist. The OT asked us to come back to see her more senior colleague as she was unsure of a diagnosis - Tiddler has always thrown the health professionals that treat her!
On Tuesday, we went back to see this senior colleague. She observed Tiddler playing and moving and concluded fairly quickly that she has a Sensory Processing Disorder. Specifically, she is Hypo- responsive in 3 different areas. In particular, she is under responsive when it comes to the pain sensation. Apparently, this is "extreme". Obviously this is pretty serious. The concern is that she may harm herself and we will not know. She stressed on me the importance of keeping her safe. The cushions on the floor have to stay!
As she uttered these words I could feel the tears coming, I couldn't suppress them. It really feels like one step forward two steps back. I worry that she may have already harmed herself and we didn't know, I worry I have neglected her, I worry I have let her go hungry, I worry that my poor little girl has been living in a black world for the first 12 months of her life and we didn't know.
Part of the problem is we don't fully understand what it all means: both for now and the future. I have started reading a book that was recommended but I will admit we are in complete shock and struggling a little to accept this latest development.
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