Cerebral Palsy
Discussion
mr brightside said:
I was going through some of my old posts and saw this, and as there were many kind thoughts I would give a quick update.
Well, what a monkey she is.
Wants to try to walk everywhere, and can walk with a stroller more or less ok. Feeds her self ok but doesn't grip things as well as 'normal kids' (I hate referring to her like that).
Into everything and very nosey.
So it looks like we have been very lucky and is certainly a million miles away from anything that was expected of her.
Wow I never saw this post originally, shocking that I missed it!Well, what a monkey she is.
Wants to try to walk everywhere, and can walk with a stroller more or less ok. Feeds her self ok but doesn't grip things as well as 'normal kids' (I hate referring to her like that).
Into everything and very nosey.
So it looks like we have been very lucky and is certainly a million miles away from anything that was expected of her.
My son was born a couple of days after yours (18th) and was one of two - TTFS occurred, the other twin died and the surviving twin was starved of oxygen resulting in heavy brain damage. There are posts with more detail about the whole situation on here. I'm glad things are going so well for you and wish you all the best for the future.
mr brightside said:
The main thing I want to say is that your kids health and happiness is the most important thing i guess, never take it for granted.
Absolutely this. I've been very lucky in that my son is very very happy, but his health, development and long term prognosis are all very poor. Only yesterday GOSH were discussing his future with me and it wasn't a pleasant conversation. The things some parents complain about make me sick; they really don't know how easy they have it.
SBDJ said:
mr brightside said:
I was going through some of my old posts and saw this, and as there were many kind thoughts I would give a quick update.
Well, what a monkey she is.
Wants to try to walk everywhere, and can walk with a stroller more or less ok. Feeds her self ok but doesn't grip things as well as 'normal kids' (I hate referring to her like that).
Into everything and very nosey.
So it looks like we have been very lucky and is certainly a million miles away from anything that was expected of her.
Wow I never saw this post originally, shocking that I missed it!Well, what a monkey she is.
Wants to try to walk everywhere, and can walk with a stroller more or less ok. Feeds her self ok but doesn't grip things as well as 'normal kids' (I hate referring to her like that).
Into everything and very nosey.
So it looks like we have been very lucky and is certainly a million miles away from anything that was expected of her.
My son was born a couple of days after yours (18th) and was one of two - TTFS occurred, the other twin died and the surviving twin was starved of oxygen resulting in heavy brain damage. There are posts with more detail about the whole situation on here. I'm glad things are going so well for you and wish you all the best for the future.
mr brightside said:
The main thing I want to say is that your kids health and happiness is the most important thing i guess, never take it for granted.
Absolutely this. I've been very lucky in that my son is very very happy, but his health, development and long term prognosis are all very poor. Only yesterday GOSH were discussing his future with me and it wasn't a pleasant conversation. The things some parents complain about make me sick; they really don't know how easy they have it.Yes, i often have to bite my tongue when other parents complain about their kids, it is very difficult at times.
All the best
M
just going through some old posts, thought i might update if anyone is interested.. (changed my user name)
Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
eric twinge said:
just going through some old posts, thought i might update if anyone is interested.. (changed my user name)
Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
I've just read the thread and I thought I'd say something about the post I've quoted. I've got dyspraxia and I had trouble learning to walk, my parents took me to a speacilist who taught me how to walk and it took quite a while for me being able to walk, it was also there that it was discoverd that I didn't like touching the floor with my bare feet. I've also got a speech and launguage disorder, and it took me until I was 5 years old until I was able to talk. I'd recomend looking for somewhere for her to go to school as it took my parents a few years to find me a place, I don't know what it's like now as it was 19 years ago when I started school.Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
edited because I forgot a peice of a sentence, also sorry for the speeling mistakes.
Edited by paulrussell on Monday 24th October 02:01
eric twinge said:
just going through some old posts, thought i might update if anyone is interested.. (changed my user name)
Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
Didn't see this first time round.Daughter will be three next month and has her challenges yes, but doesn't give up easily and makes damn sure she gets her fair share of whatever is on offer! She can take probably 10-15 steps unaided before she loses her balance, would probably do more if she didn't think it was so funny! As suspected at birth, her speech is very poor, can probably say two or three words, she doesn't seem to have tongue movement which is needed for speech. But she certainly knows her Makaton sign language and is learning extra words all the time.
My wife has learnt a great deal of words and is using this all the time.
Yes, it can be difficult at times and I can get upset about what she will miss out on as she grows up, things other kids and parents take for granted, but she is our daughter and we love her, she is a million miles away from what was originally thought. I honestly think the best physio she has is trying to keep up with her older sister and cousins!
Any way, cheers!
Because I am disabled and have been active in the disabled people's rights movement since I was a kid, I know loads and loads of people with CP, including my childhood best friend who has 'severe' athetoid cerebral palsy - not as severe as some, but she uses an electric wheelchair to get around (can use a walker a bit for short distances and gets around her place on foot without - falls over LOADS but after nearly 28 years she must have got the hang of falling over non-disastrously) and has no 'mouth' speech at all - nada, none, not a word. She can make lots of noises intentionally (and lots unintentional too) but nothing that's even close to being recognisable speech. Because of that she uses a voice-output communication aid (VOCA) and has done since she was little. She has no intellectual impairment (learning disability) at all and will receive her MA from Leeds this year.
The severity of CP has no direct bearing on whether or not the person will have any intellectual impairment, so you could get one person with INCREDIBLY severe CP, only using eye movements to communicate for example, who has a very high IQ and goes to Oxford to study physics... and another whose CP is so mild that it's not even noticed 'til they're at school but has really profound intellectual impairment and is not able to access even the earliest stages of typical academic learning. Having CP increases the likelihood of having an intellectual impairment as obviously the brain injury that causes it may also affect bits of brain in charge of things other than movement (which is why having CP also increases the likelihood of having some sort of epilepsy or other seizure disorder) - but there are no direct links or guarantees.
Historically people with very severe CP were pretty much always assumed to also have very severe intellectual impairments - with the advent of computing and increasingly good access to assistive technology more and more people are proving this not to be true - I knew a lad who eye-pointed his way all the way through six GCSEs (including essays for English etc!) before dying of pneumonia at 16, but wasn't even recognised to be 'there' at all until he was almost ten years old. The assumption that involuntary movements and/or noises are associated with learning disability is a big big problem for a lot of my mates with CP.
Eric - check out the organisation 1voice - they work with families whose kids use communication aids because of speech problems and the vast majority of youngsters involved have CP. My aforementioned mate is a member of their Executive Committee and I've gone to a few of their events as an extra pair of hands. They do fantastic work to empower young people who use communication aids to take control of their own destiny, the youngest who've been involved were around 2 and just starting out with using technology to supplement their Makaton etc. Incidentally there's a lot of research to show that using technology to back up speech helps rather than hinders further speech development because it helps little'uns keep up with developing *communication* skills while they work on actual talking.
I have problems with my speech now but for very very different reasons, it's quite a new thing for me (first started having speech issues a few years ago as opposed to mobility problems I've had getting gradually worse since I was a kid) and I communicate using any and all options available at the time - sometimes I can get by with just speech, sometimes it's a mixture of speech and sign and spelling, sometimes I use a computer communication aid, sometimes I use an eye-pointing board because my hands won't do what I tell them to. All that stuff is called Alternative and Augmentative Communication - AAC - and you'll probably hear the phrase at some point. It's a very hairy-scary thing to hear floated around as a parent of a kid with CP, I hope I won't have freaked you out by mentioning it, but over the years with my assorted mates and especially with the privilege of having volunteered with 1voice I've seen how incredibly empowering it is for kids - especially the youngest kids - to have access to as many different ways of making themselves understand as possible.
SBDJ said:
Glad it's all progressing for you 
Has she started nursery? My son started at a specialist disabled school in September and I'm really hoping it will kickstart his development.
She is at nursery now and has been for a year or so, they have taken on board a lot of the physio for her and her key worker has been learning makaton as well.Has she started nursery? My son started at a specialist disabled school in September and I'm really hoping it will kickstart his development.
We are having the discussion regarding schools soon.
BlackVanDyke said:
Didn't see this first time round.
Because I am disabled and have been active in the disabled people's rights movement since I was a kid, I know loads and loads of people with CP, including my childhood best friend who has 'severe' athetoid cerebral palsy - not as severe as some, but she uses an electric wheelchair to get around (can use a walker a bit for short distances and gets around her place on foot without - falls over LOADS but after nearly 28 years she must have got the hang of falling over non-disastrously) and has no 'mouth' speech at all - nada, none, not a word. She can make lots of noises intentionally (and lots unintentional too) but nothing that's even close to being recognisable speech. Because of that she uses a voice-output communication aid (VOCA) and has done since she was little. She has no intellectual impairment (learning disability) at all and will receive her MA from Leeds this year.
The severity of CP has no direct bearing on whether or not the person will have any intellectual impairment, so you could get one person with INCREDIBLY severe CP, only using eye movements to communicate for example, who has a very high IQ and goes to Oxford to study physics... and another whose CP is so mild that it's not even noticed 'til they're at school but has really profound intellectual impairment and is not able to access even the earliest stages of typical academic learning. Having CP increases the likelihood of having an intellectual impairment as obviously the brain injury that causes it may also affect bits of brain in charge of things other than movement (which is why having CP also increases the likelihood of having some sort of epilepsy or other seizure disorder) - but there are no direct links or guarantees.
Historically people with very severe CP were pretty much always assumed to also have very severe intellectual impairments - with the advent of computing and increasingly good access to assistive technology more and more people are proving this not to be true - I knew a lad who eye-pointed his way all the way through six GCSEs (including essays for English etc!) before dying of pneumonia at 16, but wasn't even recognised to be 'there' at all until he was almost ten years old. The assumption that involuntary movements and/or noises are associated with learning disability is a big big problem for a lot of my mates with CP.
Eric - check out the organisation 1voice - they work with families whose kids use communication aids because of speech problems and the vast majority of youngsters involved have CP. My aforementioned mate is a member of their Executive Committee and I've gone to a few of their events as an extra pair of hands. They do fantastic work to empower young people who use communication aids to take control of their own destiny, the youngest who've been involved were around 2 and just starting out with using technology to supplement their Makaton etc. Incidentally there's a lot of research to show that using technology to back up speech helps rather than hinders further speech development because it helps little'uns keep up with developing *communication* skills while they work on actual talking.
I have problems with my speech now but for very very different reasons, it's quite a new thing for me (first started having speech issues a few years ago as opposed to mobility problems I've had getting gradually worse since I was a kid) and I communicate using any and all options available at the time - sometimes I can get by with just speech, sometimes it's a mixture of speech and sign and spelling, sometimes I use a computer communication aid, sometimes I use an eye-pointing board because my hands won't do what I tell them to. All that stuff is called Alternative and Augmentative Communication - AAC - and you'll probably hear the phrase at some point. It's a very hairy-scary thing to hear floated around as a parent of a kid with CP, I hope I won't have freaked you out by mentioning it, but over the years with my assorted mates and especially with the privilege of having volunteered with 1voice I've seen how incredibly empowering it is for kids - especially the youngest kids - to have access to as many different ways of making themselves understand as possible.
HiBecause I am disabled and have been active in the disabled people's rights movement since I was a kid, I know loads and loads of people with CP, including my childhood best friend who has 'severe' athetoid cerebral palsy - not as severe as some, but she uses an electric wheelchair to get around (can use a walker a bit for short distances and gets around her place on foot without - falls over LOADS but after nearly 28 years she must have got the hang of falling over non-disastrously) and has no 'mouth' speech at all - nada, none, not a word. She can make lots of noises intentionally (and lots unintentional too) but nothing that's even close to being recognisable speech. Because of that she uses a voice-output communication aid (VOCA) and has done since she was little. She has no intellectual impairment (learning disability) at all and will receive her MA from Leeds this year.
The severity of CP has no direct bearing on whether or not the person will have any intellectual impairment, so you could get one person with INCREDIBLY severe CP, only using eye movements to communicate for example, who has a very high IQ and goes to Oxford to study physics... and another whose CP is so mild that it's not even noticed 'til they're at school but has really profound intellectual impairment and is not able to access even the earliest stages of typical academic learning. Having CP increases the likelihood of having an intellectual impairment as obviously the brain injury that causes it may also affect bits of brain in charge of things other than movement (which is why having CP also increases the likelihood of having some sort of epilepsy or other seizure disorder) - but there are no direct links or guarantees.
Historically people with very severe CP were pretty much always assumed to also have very severe intellectual impairments - with the advent of computing and increasingly good access to assistive technology more and more people are proving this not to be true - I knew a lad who eye-pointed his way all the way through six GCSEs (including essays for English etc!) before dying of pneumonia at 16, but wasn't even recognised to be 'there' at all until he was almost ten years old. The assumption that involuntary movements and/or noises are associated with learning disability is a big big problem for a lot of my mates with CP.
Eric - check out the organisation 1voice - they work with families whose kids use communication aids because of speech problems and the vast majority of youngsters involved have CP. My aforementioned mate is a member of their Executive Committee and I've gone to a few of their events as an extra pair of hands. They do fantastic work to empower young people who use communication aids to take control of their own destiny, the youngest who've been involved were around 2 and just starting out with using technology to supplement their Makaton etc. Incidentally there's a lot of research to show that using technology to back up speech helps rather than hinders further speech development because it helps little'uns keep up with developing *communication* skills while they work on actual talking.
I have problems with my speech now but for very very different reasons, it's quite a new thing for me (first started having speech issues a few years ago as opposed to mobility problems I've had getting gradually worse since I was a kid) and I communicate using any and all options available at the time - sometimes I can get by with just speech, sometimes it's a mixture of speech and sign and spelling, sometimes I use a computer communication aid, sometimes I use an eye-pointing board because my hands won't do what I tell them to. All that stuff is called Alternative and Augmentative Communication - AAC - and you'll probably hear the phrase at some point. It's a very hairy-scary thing to hear floated around as a parent of a kid with CP, I hope I won't have freaked you out by mentioning it, but over the years with my assorted mates and especially with the privilege of having volunteered with 1voice I've seen how incredibly empowering it is for kids - especially the youngest kids - to have access to as many different ways of making themselves understand as possible.
Many thanks for the above, I can't quite digest it all at the moment as I am at work but I will have a proper look later, I will certainly look at the 1voice link, that sounds very helpful.
Cheers
E
Great post Becca, hope you are well.
Communication is a big problem. He has no real motor skills so sign is out. Ooh, aah and oh are his verbal. We've learnt to interpret his facial expressions and cries which helps us but is a problem for others. One of his conditions carries a 90% chance of mental retardation and another carries a high chance of him never developing speech.
It's not all doom and gloom, he has recently started trying to sit up and can get a couple of inches off the ground
eric twinge said:
She is at nursery now and has been for a year or so, they have taken on board a lot of the physio for her and her key worker has been learning makaton as well.
We are having the discussion regarding schools soon.
Sounds like you've had more luck than me. We struggled to find a nursery who could cope and he couldn't start at the specialist school until they had done his statement. Which they lost. He is in now and its where he will go to primary school too.We are having the discussion regarding schools soon.
Communication is a big problem. He has no real motor skills so sign is out. Ooh, aah and oh are his verbal. We've learnt to interpret his facial expressions and cries which helps us but is a problem for others. One of his conditions carries a 90% chance of mental retardation and another carries a high chance of him never developing speech.
It's not all doom and gloom, he has recently started trying to sit up and can get a couple of inches off the ground
Hi Guys
A bit of an update really, and perhaps let of a bit of steam, there are a lot of helpful people here.
Well my daughter is now not far off 3.5 years old, she really is now noticing that she is different to the other kids at nursery / playground etc and it kills me to be honest.
Generally she is a very happy child, loves peppa pig, stories, eating, ice creams, trampolines and of course more than anything her big sister. She has her walker and whizzes around and crashes/bangs about.
However, when we are out at various places and she is using her walker she gets lots of attention and the majority of it is great, people talk to her, open doors for her, and we get lots of help from strangers, so my faith in human nature gets restored often.
What I find difficult and upsets her as well is other kids staring, getting in her way, trying to take her walker off her and getting right in her face and I can tell she she is getting upset.
Now I know this is 'just kids' and they do not know any better, I am not upset at them, i guess I am upset at the situation, even now 3.5 years later.
She is so lucky really, the prognosis was SO much worse, we have so much to be thankful for and it is this I have to remember but it is hard when she is surrounded by others kids younger than her as if she has landed in a spaceship.
The gap between her and her peers is only going to get worse...
But do you know what, we love her, she makes us laugh and is a real character!
I am rambling, thanks for reading.
A bit of an update really, and perhaps let of a bit of steam, there are a lot of helpful people here.
Well my daughter is now not far off 3.5 years old, she really is now noticing that she is different to the other kids at nursery / playground etc and it kills me to be honest.
Generally she is a very happy child, loves peppa pig, stories, eating, ice creams, trampolines and of course more than anything her big sister. She has her walker and whizzes around and crashes/bangs about.
However, when we are out at various places and she is using her walker she gets lots of attention and the majority of it is great, people talk to her, open doors for her, and we get lots of help from strangers, so my faith in human nature gets restored often.
What I find difficult and upsets her as well is other kids staring, getting in her way, trying to take her walker off her and getting right in her face and I can tell she she is getting upset.
Now I know this is 'just kids' and they do not know any better, I am not upset at them, i guess I am upset at the situation, even now 3.5 years later.
She is so lucky really, the prognosis was SO much worse, we have so much to be thankful for and it is this I have to remember but it is hard when she is surrounded by others kids younger than her as if she has landed in a spaceship.
The gap between her and her peers is only going to get worse...
But do you know what, we love her, she makes us laugh and is a real character!
I am rambling, thanks for reading.
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