Today Tiddler had an appointment with the Developmental Paediatrician. I went on my own with T, unsure of what it would entail but reckoning on a 15mins with possible immediate discharge.
2 hours, several Braxton Hicks and a few more grey hairs later, we emerged from the appointment with T beyond tired and me fighting back the tears.
Ironically, the appointment went quite well...it was very detailed, with the Paediatrician taking a lot of history and then observing her accomplish various tasks: drawing, identifying objects, building block towers etc etc
She more or less hits the spots that she should, finding herself in the 15-18mth bracket for most aspects apart from communication which she was a bit more advanced, and cognitive and personal care or something like that which she is more like 12 mth level. It was a very interesting process to observe, she casted objects like a trooper, totally refused to build a brick tower.. It was reassuringly typical behaviour...
They did express concern as to her attention span... Which is woeful and incredibly incredibly exhausting so I was glad that this was picked up on as I felt validated. I have been trying to tell people how difficult it is to manage her as she will not stay on a task for more than 2 minutes, if you are lucky!
Her head banging and casting behaviour was also picked up on again and the basic upshot is she is getting referred to our Local Authority Educational Psuchologist to be assigned a pre school teacher. I have been trying to get T into this system and had been told before that because she was without a diagnosis this was unlikely. Thankfully, now she has been seen by the Paediatrician they have a Statutory duty to notify the local authority.
So a positive appointment all in all but there is no way I am flying solo with appointments like that again. It's impossible to manage bump, bags and very wriggly non walking toddler without a pushchair... Again... Not allowed in the building... We have heard that somewhere before...
Showing posts with label headbanging. Show all posts
Showing posts with label headbanging. Show all posts
Tuesday, 15 May 2012
Sunday, 22 April 2012
I find different difficult.
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.
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.
Monday, 19 March 2012
Finding answers
It's been a strange day where I haven't known whether I was coming or going.
I met with another prospective childminder and was confronted by the inherent differences between her child and mine, (they are a month apart). Difficult in itself. It is, I find, very difficult to know how much to say to childminders and at what point. I briefly mentioned Tiddler’s head banging and throwing of objects but hated to do so although I knew I must.
I don’t think I am ever going to feel comfortable leaving her with a childminder. I just feel that T has been through so much and been so poorly I can’t leave anything to chance and need to be 100% confident about all aspects of the prospective childcare. It seems this is too ambitious.
Next we went to the local Children’s Centre and although there were several mums there that I knew, I could not relax and chat to them as they were amongst each other, because Tiddler was throwing toys and there were some really tiny babies close to her. She really doesn’t understand “no” yet and in any case I don’t believe that she is doing the “casting” deliberately. She cannot grade her movements, particularly with her arms. I think this is partly due to her weak muscle tone as she didn’t have the opportunity to develop her movement skills gradually as a baby normally would.
This afternoon Tiddler went to her playgroup for children with additional needs and upon picking her up I was told how well she has progressed in the last few months. She has done really well I know. Although she is not talking / saying any words yet she is signing really well to several nursery rhymes (Twinkle Twinkle Little Star being a particular favourite) which surely demonstrates how sparky she is. I cant help but wonder / worry why she is not saying words yet but hopefully this worry is just due to my status as the world’s worst worrier rather than anything else.
Drop in a couple of hardcore incidents of head banging, particularly in the car, and we have a stressful day with high highs where I was bursting with pride and desperate lows where I wonder how I will cope as things are consistently difficult and very very lonely. Let alone wondering how I will cope when the baby arrives…
I met with another prospective childminder and was confronted by the inherent differences between her child and mine, (they are a month apart). Difficult in itself. It is, I find, very difficult to know how much to say to childminders and at what point. I briefly mentioned Tiddler’s head banging and throwing of objects but hated to do so although I knew I must.
I don’t think I am ever going to feel comfortable leaving her with a childminder. I just feel that T has been through so much and been so poorly I can’t leave anything to chance and need to be 100% confident about all aspects of the prospective childcare. It seems this is too ambitious.
Next we went to the local Children’s Centre and although there were several mums there that I knew, I could not relax and chat to them as they were amongst each other, because Tiddler was throwing toys and there were some really tiny babies close to her. She really doesn’t understand “no” yet and in any case I don’t believe that she is doing the “casting” deliberately. She cannot grade her movements, particularly with her arms. I think this is partly due to her weak muscle tone as she didn’t have the opportunity to develop her movement skills gradually as a baby normally would.
This afternoon Tiddler went to her playgroup for children with additional needs and upon picking her up I was told how well she has progressed in the last few months. She has done really well I know. Although she is not talking / saying any words yet she is signing really well to several nursery rhymes (Twinkle Twinkle Little Star being a particular favourite) which surely demonstrates how sparky she is. I cant help but wonder / worry why she is not saying words yet but hopefully this worry is just due to my status as the world’s worst worrier rather than anything else.
Drop in a couple of hardcore incidents of head banging, particularly in the car, and we have a stressful day with high highs where I was bursting with pride and desperate lows where I wonder how I will cope as things are consistently difficult and very very lonely. Let alone wondering how I will cope when the baby arrives…
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...
Wednesday, 2 November 2011
Paediatrician Tomorrow
Tomorrow Tiddler has her appointment with the Consultant Paediatrician.
This time we have had the longest gap ever since her last appointment- 3 months. She has changed a lot and I know he will be blown away. As I type "I know he will be blown away" there is a voice telling me to "shut up, when will I learn" etc. Each time I build us up the fall when we are knocked down is greater and it hurts a damn sight more too. We were super positive but the Physio appointment last week pissed on my parade somewhat.
I am worried about her head banging, this is new and with her history I wonder whether we will be asked to reconsider an MRI scan. She has already had one, but she wriggled through it. Any future scan would have to be done with a general anaesthetic, hence we asked them to hold off when it was arranged back in May.
I wonder what her weight gain will be? Her feeding is still patchy, and she is still small although at the last weigh in she had jumped a centile!
It will be interesting to see what he thinks about her physical development... is she still delayed by the same number of months? As of last night, her unique travelling movement has morphed into commando crawling. We are totally blown away by this- we were told she probably wouldn't be able to crawl.
Both myself and OH really respect and like Tiddler's consultant and I am looking forward to it as I know he will give us a bit more black and white in our world of grey and unknown.
This time we have had the longest gap ever since her last appointment- 3 months. She has changed a lot and I know he will be blown away. As I type "I know he will be blown away" there is a voice telling me to "shut up, when will I learn" etc. Each time I build us up the fall when we are knocked down is greater and it hurts a damn sight more too. We were super positive but the Physio appointment last week pissed on my parade somewhat.
I am worried about her head banging, this is new and with her history I wonder whether we will be asked to reconsider an MRI scan. She has already had one, but she wriggled through it. Any future scan would have to be done with a general anaesthetic, hence we asked them to hold off when it was arranged back in May.
I wonder what her weight gain will be? Her feeding is still patchy, and she is still small although at the last weigh in she had jumped a centile!
It will be interesting to see what he thinks about her physical development... is she still delayed by the same number of months? As of last night, her unique travelling movement has morphed into commando crawling. We are totally blown away by this- we were told she probably wouldn't be able to crawl.
Both myself and OH really respect and like Tiddler's consultant and I am looking forward to it as I know he will give us a bit more black and white in our world of grey and unknown.
Tuesday, 25 October 2011
Physiotherapy & the Nature of the Beast
Why do I feel so devastated?
I had thought Tiddler was doing really well- a growth spurt, almost sitting, fashioning her own crawling, mastering bite/dissolve foods.
Why then, why did I drive home from her latest Physiotherapy appointment hurting and fighting back the tears?
T’s lovely physio gave her the fab patent hot pink Piedro boots to try on. Mummy would have liked a pair in size7. Seriously, they rocked. Due to T’s Chicken Pox we are a little later than intended, and so they only just fit. Oops. Size 2 and ½!
Tiddler went ballistic. Screaming and screaming, real tears, she was NOT happy. She hates socks / bootees anything on her feet so I suppose it shouldn’t have come as a surprise. Eventually, with my holding her and the Physio battling, we got the boots on. Still the screaming ensued. She tried T standing in them, I meanwhile was desperately trying to distract/ cheer her up. In the end I had to intervene and ask for us to take them off. I couldn’t bear to hear her upset any longer. It really didn’t seem worth it.
Upset number 1: the Physio at this point said she was really wobbly and weak and would need a standing frame as well as the Piedro boots. At our last appointment she had not said this. I know it’s only temporary but it still makes her less able than her peers and makes me concerned again about her future abilities. As she has been doing so well I had thought she would be walking by 18 months. I feel a bit stupid now. Maybe this won’t be the case. I am angry with myself that I let myself believe everything was nearly "there".
Upset number 2: I mentioned in passing that although her arching behaviour has got a lot better, she has started head banging. I have assumed this is a normal phase, it seems not. Now I am concerned. As she is still without a diagnosis, I suppose if there is to be one, then little pieces of the jigsaw such as head banging help to work out what the overall condition is.
The Physio suggested it is either behavioural - which is what I have assumed it is- or otherwise sensory? Now I have googled this quickly (I know, I know….) and it seems that it may be an issue with sensory processing. She also seems to have a very high threshold for pain. Whatever it is the appointment has brought me down to earth with the bump I was waiting for. Even if this latest episode turns out to be nothing it just shows we are never that far away from hypothesising, grey, twists and turns. I guess that’s the nature of the beast.
I had thought Tiddler was doing really well- a growth spurt, almost sitting, fashioning her own crawling, mastering bite/dissolve foods.
Why then, why did I drive home from her latest Physiotherapy appointment hurting and fighting back the tears?
T’s lovely physio gave her the fab patent hot pink Piedro boots to try on. Mummy would have liked a pair in size7. Seriously, they rocked. Due to T’s Chicken Pox we are a little later than intended, and so they only just fit. Oops. Size 2 and ½!
Tiddler went ballistic. Screaming and screaming, real tears, she was NOT happy. She hates socks / bootees anything on her feet so I suppose it shouldn’t have come as a surprise. Eventually, with my holding her and the Physio battling, we got the boots on. Still the screaming ensued. She tried T standing in them, I meanwhile was desperately trying to distract/ cheer her up. In the end I had to intervene and ask for us to take them off. I couldn’t bear to hear her upset any longer. It really didn’t seem worth it.
Upset number 1: the Physio at this point said she was really wobbly and weak and would need a standing frame as well as the Piedro boots. At our last appointment she had not said this. I know it’s only temporary but it still makes her less able than her peers and makes me concerned again about her future abilities. As she has been doing so well I had thought she would be walking by 18 months. I feel a bit stupid now. Maybe this won’t be the case. I am angry with myself that I let myself believe everything was nearly "there".
Upset number 2: I mentioned in passing that although her arching behaviour has got a lot better, she has started head banging. I have assumed this is a normal phase, it seems not. Now I am concerned. As she is still without a diagnosis, I suppose if there is to be one, then little pieces of the jigsaw such as head banging help to work out what the overall condition is.
The Physio suggested it is either behavioural - which is what I have assumed it is- or otherwise sensory? Now I have googled this quickly (I know, I know….) and it seems that it may be an issue with sensory processing. She also seems to have a very high threshold for pain. Whatever it is the appointment has brought me down to earth with the bump I was waiting for. Even if this latest episode turns out to be nothing it just shows we are never that far away from hypothesising, grey, twists and turns. I guess that’s the nature of the beast.
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