Guilt is a recognised symptom of motherhood - don't beat yourself up! Ask your physio to show you how you can involve the other children in your little ones physio routines - my daughter is the youngest of three and the physio was very aware that I had other things to do as well as physio. (She also used to involve them in the physio sessions when she came) My other two had physio 'jobs' to do (that were mostly making noise and 'play' distractions) whilst I did stretching etc - but the physio gave them their jobs and showed them where to shake the bells/ call her name/ lie on their tummies/ rub the back of her hands/ open her fingers (and how to do it gently!!!), roll the balls... Some exercises we did to specific songs and they could all sing etc - It worked for 5 minutes or so each time - which was better than nothing - the others are going to realise that this is going to be an ongoing part of their lives... the first while is pretty tough - these days the big kids help her out loads and have got a greater understanding of differing abilities... the kids do family physio sometimes and make a game of it - they all lie on their backs with twinkly sticks aloft and sing 'the grand old duke of york'. (My youngest is now 3 1/2)

our most useful time for 'stretching' physio when she was tiny was a session straight from the bath when she was more relaxed... and we used to do the developmental skills and 'play' stuff when it fitted in at some point during the day - as your little one get bigger you will find a time during the day that suits your family. If your physio is happy with progress then you have nothing to worry about - the OT support will kick in and provide seating or standing equipment that will allow him to be more a part of what is going on (I'm assuming he is still quite tiny?) - then you'll have lots of fine motor stuff to do too - but bigger kids are great at 'helping' with that!

My son was 20 months when his sister was born and my daughter 3 1/2... you've got even more to contend with but there are ways and means - and don't forget twenty minutes of TV isn't going to hurt anyone if you need them out of the way! (Get a couple of 'educational' dvds if it makes you feel better - we used a Makaton signing vid eventually which killed two birds with one stone!)

You could also contact Homestart and ask if a volunteer could come and play with the others for a bit to give you space.

AND apply for DLA if you are entitled - mind you - personally I wouldn't use it for private physio - you'll be using it soon enough for all the other extortionate sensory toys and equipment that costs a fortune because it has an SN tag!!

Wishing you lots of luck and helpful siblings!

Hi all

Ditto to what everyone else has said!!

Most peoples live are very very busy these days and the added pressure of physio can be a lot to cope with at times. I wonder how old your son is, my son is 5 1/2 and now receives daily physio in school, this was included as part of his statement. It has taken the pressure off a little bit, I now try to do things like put him in standing frame while he plays the playstation (our rule is - no standing frame - no playstation!!) or change his sitting position if he is watching TV, we do a few stretches throughout the day but on a school day the pressure is off a bit.

As for the DLA........claim it.....its not you as such but your child is entitled to it so claim it.....we all have to battle for so many other things, so get what you can thats what I say.

Kate
xxxx

[quote name='mykidsastar' date='Apr 4 2007, 01:31 AM' post='9955']Regards the DLA I just felt so guilty taking it as my son hasn't yet been diagnosed and thought I would be some how giving in on him "getting better". i now realise that accepting help in any form isn't giving in. [/quote]

I do understand where you're coming from! but.... he could never get a dx... (hopefully he does as for some strange reason we like to put names/labels to things! lol ) so if anyone offers you anything then say yes straight away & don't feel guilty for a second!!! :D

It sounds like you have fantastic kids there and would love to hlep out more, well done you for bringing them up to be that way. xxxx :)

take care, wendy x

Hi 'mykidsastar',

My name is Helen and my son also has CP. His name is Oliver and he is nearly 3 yrs old.

I just wondered have you ever tried taking your son to Hydrotherapy! Oliver goes once a week and he really loves the warm water. The sessions are run by his NHS Physio and we dont have to pay for them.

As well as the Physio session, it doubles up as a Social Event for him as he mixes with the other children there.

Lots of Love Helen x.

thanks wendy glitteryb debbie and others

Debbie his head control is good and he can sit for a wee while on my legs or the bed but doesn't like it on the floor. I had actually thought about get a baby walker and doing the same thing you done. Iwill let you know how I get on.

Over the last month he definately seems to be making a lot more progress, probably because I am a lot more positive now.

Glitteryb I have contacted CraigAlbert, unfortunately because my son gets home physio and speech therapy etc that would have to cease before they could take him on. Also I wouldn't be able to get to Cumbernauld everyday so at the moment it is not possible, but a definate possibility for the future I hope.

Good luck - I'd look for a static system though rather than a walker type on wheels - they seem to get physios extremely upset! The one we had was a 3 in one thingy on a circular base with a swivelling seat - so we could swivel the seat round but the base stayed in one place - does that make sense?!

My bean was born in Paisley btw, but we're way down south now.

Hope it all goes well and he enjoys his new toy! (Don't forget you can use your local toy library as well - sometimes they have bigger bits of kit so you can try him out to see if it's going to be any good before you part with any cash! - they usually have a reasonable sn section too)

Debbie xx

mamas and papas do a fixed base swively seat thingy but i think its about £100 but has loads of activites on it to keep them happy and my physio had a look at it and thought it was pretty good.

as for craighalbert its free for under twos for one afternoon a week and its a good way to try it out and see if it suits you/your son.
when they turn 2 and the education authority has to pay for them going there they can organise you free taxi transfers so you can get there ok.
its not until they turn 2 and the placement starts being funded by the council that the physio and salt would withdraw

our physio and salt stopped coming when we started going there for the 3 mornings a week as under the north lanarshire agreement they have to withdraw but as everythings very related to getting them moving and doing stuff i find my son gets more input there than i could give him at home as there are always lots of staff members to help with excersises and stuff.

depends where you are in lanarkshire as well if its north lan you would get 3 mornings and if its south lan you get 4...bizarre!

hope this helps

[quote name='mykidsastar' date='Apr 6 2007, 12:25 AM' post='10002']
thanks wendy glitteryb debbie and others

Debbie his head control is good and he can sit for a wee while on my legs or the bed but doesn't like it on the floor. I had actually thought about get a baby walker and doing the same thing you done. Iwill let you know how I get on.

Over the last month he definately seems to be making a lot more progress, probably because I am a lot more positive now.[/quote]

no problem! :D

tbh I'd stick with the physio exercises for the sitting, they do work, sometimes you get to a lull when you think nothing is working but then suddenly they've make a small progress! xx

daniel would sit on my knee for ages before he actually sat up on his own. we realised daniel loved music so we'd do his long leg sitting exercies infront of a mirror and do his arm stretching too and sing "wheels on the bus" or "when you're happy when you know it" etc or just do silly dance moves etc... :D

take care x

Hi, Im not a parent, but as an adult of 43 with cerebral palsy (Diplegia) your comments made me think. My earliest memory of physio was at school, various stretching exercises combined with splints that you had to wear through the night, although if Im honest they mysteriously found there way onto the bedroom floor.

Physio was something that happened as part of school life, it was an inconvenience and a pain, probably because it was uncomfortable. It's importance was not part of my reasoning compared to playing with my friends listening to music and doing stuff that children do. I enjoyed going swimming and horse riding which was also part of the physio routine, but as a child that was less clinical good fun, and probably helped to stretch all the right muscles, in all the right places. (Although l still had to have surgery).

Hindsight is a wonderful thing and if someone was to ask me would more physio have made a difference? Would my body be more supple and have less contractures in my hips knees feet? Would my balance be better, would I walk further? The answer is I don't know, although as an adult I understand its importance in a way that I never would have as a child. As someone said earlier it's about finding a balance. Physio is important, as part of a childs development, but its one part of the whole picture.

Research has come a long way since I was young with SDR surgery, Botox injections, AFO's, Conductive Education and various other therapies and equipment to help children as they develop. All of these developments are excellent and if they help to improve mobility, balance, co ordination and reduce levels of spasticity, then that's a good thing and parents, at different times, are going to make decisions based on the possible positives and negatives of these options.

I have no doubt that my parents could have tried to do more physio, (allowing for the fuss I would have made), pushed for the latest therapy or searched for other opinions, and for all I know, they may have without me knowing. Equally they could have done less, would I have minded? No. They just did what they thought was right.

If someone was to ask did the choices they made for me as a child and the choices I went on to make as an adult affect my quality of life, I would say yes in a good way.

Do they feel guilty? I really hope not.

hi there, im also in lanarkshire! i used to feel the same as you, as if i wasnt doing enough, what changed things for me is when my son started attending conductive education at the craighalbert centre in cumbernauld, he currently goes 3 morning a week but after summer he will go in for 4 full days, i just feel he gets constant input there, not all physio to be fair, but it is all motor skills related and he loves it!

Hi, I would pretty much echo what others have said (esp about DLA not being nearly enough for daily physio!!!)

But I would also like to say that it is just a fact that you may well, from now on, always feel guilty about what you are not doing for your disabled child. It basically comes with the territory - and especially if you have not yet had a diagnosis and so are still in quite early stages of getting to grips with how your life has changed...

I do not say this to be hurtful but because almost all the parents of disabled kids I know have spent many hours worrying about whether they are doing enough or the right things for their child.....

In the end you and all your children have to have a life - you will never be able to do as much physio as MIGHT be ideal ... but you will also hopefully have fun as a family, your disabled child will get life expereinces from his siblings that no amount of therapy can compete with.

We have never been able to do all the exercises etc that have been prescribed - we have actually spent the bulk of our time on communication related things as my son has no speech - but we kind of came to realsie some years ago that whatever we did would not be enough - and we could go on trying and busting a gut but miss out on having a life too. So it's all a big compromise - and I try not to feel guilty cos if I started I'd never stop..!
Best wishes

We had a Jenx giraffe too at that age - and the others loved pushing her around the house and climbing on the back of it - it was the bane of my life and I was always stubbing my toes on it!

Don't know how his head control is but we had a sit-in play thingy at the same time (like a baby walker with a hanging seat but with no wheels?) - we had to pad it with rolled up towels to give her enough support in it as otherwise she just sort of sagged and couldn't use her arms - and the physio was initially horrified by the idea and thought it would lead to all sorts of problems (particularly with her legs etc) - but we persuaded her to have a look and she loved it - even borrowed it to try other kids in it... (in fact we donated it to the physio department when she outgrew it and they lend it out now) basically it worked her trunk, improving her core stability as she gradually tried to play with the different bits - the inside bit swivelled round so you could turn her to face different toys etc, but it really let the other kids get all round and gave her the support and confidence to try to weight bear a little, and turn and reach, knowing that she was supported (she then got a proper standing frame).

I'm so glad he loves to interact with the other kids - I swear that's why Anya is so determined.

Good luck with everything!
Dx

Hi everybody

Thanks for the advice on physio. Regards the DLA I just felt so guilty taking it as my son hasn't yet been diagnosed and thought I would be some how giving in on him "getting better". i now realise that accepting help in any form isn't giving in.

He is now 13 months old can't sit roll or bear weight on his legs. He can however melt a room with his smile, clap his hands, hold his owm bottle and say dad. These are things I took for granted with my other children but were such milestones for him.

I will take on board getting my kids involved more in his physio although they do love him and get so excited when he makes a new sound or makes any kind of progress. They also wheel him about in his feeding chair (shaped like a giraffe with wheels) to play with them, which he loves. So I suppose he is getting all the love a child needs from his siblings.

Thanks again I will keep you posted on my progress with physio

lol debbie! our replies are so simliar! heehee! :) xxx

don't ya just hate this premoderated time gap thingy?! lol

by the time I've finished typing I post to find someone else has already answered.... ah well, great minds think alike and all that! xxx

hi mykidsastar, welcome to scope :)

don't feel guilty about it, maybe you've just not foudn the right routine yet to fit around the other children? how old is your son? maybe you could get his older brothers/sisters to help out? depending on how severe his cp is, maybe they could do a bit of sitting and playing with him? it all adds up in the long run..

can I just ask why you haven't calimed DLA for him yet? even if you don't need the money now you could always put it in a bank account for when he's older? special shoes, equipment does cost quite a bit so it would always help at some point... :) I don't think DLA would pay for private physio everyday as it's only £45 a week! lol (wishful thinking eh? lol :) ) but it would certainly help towards it...

what are you doing with her now? sometimes we can do more than we think we do!! have you spoken to her physio about it? maybe she could show you some easier moves/exercises to them in? I'm 30 weeks pregnant with no.2 at the mo and I've asked for exercies and she showed me how to do them slightly differently as my bump is getting bigger and it's getting harder to bend over!! lol :)

speak soon, wendy xx :)

Hi everyone

I just want to know if anyone knows of any private phsiotherapists around Lanarkshire, Scotland. My youngest son has not yet been offically diagnosed with C.P although I have been told by a number of his proffessionals that it is only a matter of time. He has a fantastic physiotherapist who comes once a fortnight and sometimes more if she feels he hasn't had a great session. My problem lies with the amount of physio I can give him a day. As the youngest of five highly energetic children I am constantly trying to squeeze in a bit of physio here and there. Every night I feel so guilty that I haven't done enough. I was advised that I am entitled to DLA which I disregarded until now. However I was thinking if I claimed it I could pay for private physio every day. He is such a happy wee boy and it breaks my heart when I see him watching his big brothers and sisters play. Any advice would be greatfully appreciated

I've known some people advertise for OT/PT students to assist with giving therapies - you could try that depending how close you are to Glasgow (some may even help voluntarily).

I remember seeing posters up around my local uni asking for suitably qualified students (OT/PT) to help a little boy with CP.

Hi everyone

Thankyou again for your wonderful comments and advice. Thankyou especially to almo41 your comments have made me feel so much better, that hopefully my son will be what I wish for all my children. That they are well rounded good people that can contribute to the wider society.

Just a wee congratulations to Kainan who is now bearing weight on his legs after one week in his standing frame. Well done son