Tiddler had her OT follow up on Friday. In the main, the appointment went ok. her headbanging is still the major concern... I had managed to video episodes of her headbanging in the car which was useful I think.
They have no idea why she is doing this, my theory is that it is Tiddler trying to get a "buzz" or any sort of sensory feedback. It isn't linked to mood but is much more prevalent in the car. Unfortunately, Tiddler is still too small for the next size car seat which is frustrating nd means there is little we can do about her seating for now really unless we buy an entirely different car seat to the one we already have for her to move onto. We have found that she stops headbanging in the car when we turn music up very loud- this has prompted the Therapist to recommend we get her hearing checked out but she has also suggested we try T with headphones playing soothing music. I have no idea how small they make headphones but it's nothing a good Google won't solve! We are waiting for a helmet for T as they cannot be sure she isn't causing damage with the banging.
This is heartbreaking for me but I don't feel we have an option right now. I just don't want her to look different I suppose... This is clearly my issue. I need to get my head round it. I don't want people to make judgements about her. I don't want the looks. Or the questions. There is of course nothing wrong with being different. My little girl is fantastic and beautiful in every way but although I can write the words I can't quite live the words as well. I still find different difficult.
Showing posts with label Occupational Therapist. Show all posts
Showing posts with label Occupational Therapist. Show all posts
Sunday, 22 April 2012
Monday, 6 February 2012
Pain and OT
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.
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.
Wednesday, 18 January 2012
A Tiddler update 13.5 months old.
Hello Blog, it's been a very very long time.
Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!
Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.
We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.
What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks". Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.
The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.
In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...
Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!
Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.
We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.
What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks". Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.
The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.
In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...
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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