Sounds like they are all doing so well, Isaac had his second physio appointment today and she is now sending a report back to his paediatrician as she has agreed that his behaviour is extreme and he is not engaging in the way that she would expect him to be, she said it is not her area of expertise she is mainly concerned with his joints and muscles etc, got loads more tips and advice on how to help him everyday from simple things like kneeling at a low table to draw, she showed me how to position him correctly so he is working his muscles whilst he is playing but not realising he is doing it. She does think that maybe a sensory disorder could be his problem as he absolutely freaked when I had to get him undressed, she also said that she will usually get her assessments completed in a one hour session even with the least co-operative child but Isaac has now had 2 sessions and she still hasnt managed so that suggests something else.
I am not surprised about that to be honest and in a strange way I feel relieved that some one else has agreed that it is not just him being an 'awkward toddler' she has also said that things like dyspraxia or dcd and hypermobility are very closely linked and all these things fall under the autistic spectrum umbrella. Hopefully when we see the paed again in December we will make some further progress in finding out what is actually wrong.
I do hope your paediatrician gets to the bottom of this for you. Bet you're so relieved that someone else has noticed it too. Keep on with the exercises as they do work after a while. You just need to stay as positive as you can. He has made so much progress since we all started on this forum so remember that when it gets tough. Liddy needs new boots and is due for her next physio session in 2 weeks time so hope it all continues to go the right way!
Just out of interest, how old are your little ones? Lydia is 2 years and 5 months. Our paediatrician told us to apply for DLA but I've been online and it says we can't apply until she's 3 years old.
Isaac is 21/2 I had heard that you can't apply for DLA until they are 3 as well, trouble is we don't have a definite diagnosis for Isaac so I dont think it will be easy anyway. I did fill in a form for Phil because of his tumour and his fits but we got turned down for that, I have heard its better if you get someone who knows the ins and outs of the form to help you do it. Good luck, maybe try the CAB they are quite good.
You can claim DLA from the day your baby is born if you know they need extra care, we've been getting it since Paul was about 6 months old I think I can't remember now. There are 2 parts to the allowance, Care and Mobility, you can't fill in the form for mobility until your child is 2 and half for when they are 3, but if you are entitled to DLA for care component, this can be claimed now.
You should go and see CAB or even just telephone the benefits enquiry line (number on the form) to get some help in filling it in as some of the questions are a bit mad.
I went to a government run place called 'The roundabout centre' which specifically helps with benefit forms although after going I could have filled it in my Mypself but was glad of the help.
You have to put all the Dr details on, and often they will contact them, if they don't contact anyone or come back with a refusal, ALWAYS appeal. The care component deals with things like do they need extra care than another child of the same age and it has to be quite significant. so for example, although we don't have a definative diagnosis for Paul, his neurologist describes it as a possible Conjenital Myopathy so that's what I put on the form, I used more paper too at the end to list lots more information about day to day care. List ALL the physio you have to do, or posture correction, how many times a day etc. It is pretty constant with Paul and he also needs re-positioning at night sometimes too as he breathes in his syliva which causes him to wake, or cough things like that. Paul also has special equipment for seating etc so it's always a good idea to try and get an occupational therapy referral.
you guys should phone the enquiry line and just get some general information about the form, they can post one to you too.
Paul will be 2 at the end of November by the way so we don't get mobility but we will be resubmitting our form when he's approaching 3 to see if we are entitled to Mobility as well as the care component.
Thanks for that Chriss that is very helpful, we did appeal when phil got turned down but we still got nowhere. The physio has said that Isaac may have some sort of sensory integration dysfunction and maybe showing signs of dyspraxia, she is also concerned as she doesnt think he is engaging in things in the way he should and once he does become engaged in an activity, which is usually one he has decided himself then he will not break away from it, he also avoids eye contact if he is having what I describe as one of his off days, also if he is having an off day it is a real battle to get his physio exercises done. As it happens I have just had to do an assignment for college on dyspraxia, which is very closely lined with Sensory dysfunction also global development delay and loads of other conditions, When I was researching and writing up, it was almost as though I was writing about Isaac so when I have his paed appointment in December I am going in armed with lots of questions and information and hopefully we may get somewhere. Hope your little man is getting on ok keep us posted xx
I'm glad it was of help, I never even knew this sort of help was available until we went to a special needs group and another mum was applying. I have since spoken to a friend who was told about DLA by the SCBU midwife who helped her fill in the form, you never know about these things until someone tells you which tends to be the way with most benefits I suppose.
Hayley 1, don't be put off by your refusal for your husband's application, the child's form is quite different, I was going to claim for myself but was totally put off by the adult form. There is so much you can put in the form for conditions you describe, all about the help they need to stay safe in the home and outdoors etc. Also if you do manage to get DLA and you get tax credits, you can get a suppliment on top. also if you get the high or middle rate of the care component, and if you yourself earn less than ??95 per qeek, you can also claim carers allowance.
We are having loads of bumps at the moment, it's really tight as Paul is trying so hard to get about quickly he is tripping and falling over, he's even chipped a tooth I'm gutted. He doesn't have the reflexes for exmple in his arms (I still don't have them) I don't think it affects me as much as I've obviously learned to at least attempt to break a fall, but when they're little its all about the reflexes and Paul has never really had them.
We've also had a hearing test result the other day that shows he's not hearing quiet sounds, his speech and language specialist thinks it could be related to the fact that he has a significant amount of secretions and stuff, he doesn't caugh it up really so it hangs around a lot more, could be building up I suppose. We've started doing baby sign which is brilliant, he can say so much and we do nursery rhymes and things its loads of fun. I'm pleased we started it a few weeks ago as he's grasped a few key words already. He asked me for More toast for supper, and asked hisdad if they could go outside, and asked if his dad could open the door to see the stars all using signs and words too I was so made up.
Aww bless him, my friend has a little girl with downs syindrome who is 18 months old and she is signing, she said the first time she asked her for strawberries she ws nearly crying as she was so proud. Isaac is like paul in that he doesnt break his fall, luckily he isnt falling over so much now but he did go through a phase where he had a permanent bump and bruise right in the middle of his forehead, and a graze on his nose, I guess they were the first things to hit the floor. He always seems to manage to fall and bump himself right before an appointment as well .
He is doing ok at the moment but I think I will phone and at least ask for the forms, it would help us with the cost of his shoes and the cost of travel to all his various appointments if nothing else.
You should just go for it with the form you know, even though he is doing well, it's hard filling it in because you have to look at it from a 'worst day' scenario, as with our little ones it can be variable depending how fatigued they are etc but you know yourself, although you just get on with things, there is so much extra care you have to take. Just go and see CAB and get their help, they help people with these forms every day and know how you are meant to fill them in.
sorry don't mean to ramble on about it but I just think so many people don't realise they are entitled to this help. I know how you feel though, I could probably claim DLA for myself but I'm so terrified of being turned down I won't apply, mostly because I have muddled on all this time without knowing that DLA even excisted, how is it different now???
Anyway if you need to chat about the forms when you get them just shout.
I'm loving the signing with Paul, he's really enjoying it and we're collecting a special 'BookStart' pack tomorrow from the library which concentrates on signing v excited.
I just wanted a bit of advice. Are your boys potty trained? Did you have any trouble doing the whole potty training thing? I'm not convinced Lydia is able to even feel she's wanting to wee and poo and obviously I have to help her sit on the potty and help her back up etc etc.
Hi charlotte, Isaac is not potty trained, I did try a few months ago, I got him a thomas potty (he loves thomas) it is one that is like a chair as he can get himself on to a chair but not on to the floor to sit down, anyhow, he totally freaked out when I tried to put pants on him (even though he chose them) he was almost scratching himself trying to get them off, he was hysterical and screaming "no get it off" so I decided to leave it a while. I have tried to reintroduce the pants by putting them over the top of his nappy but he still doesnt like where they touch his skin and gets really upset. He was due to have his 2 1/2 year check this week and I was going to ask the hv but I had to cancel it as I had swine flu. My friends little boy has hypermobile joints and he is 7 and he still has a problem with going for a poo because the muscle tone is low so he can't feel when he is going, Isaac knows when he has gone but not when he is going so I guess that is one more obstacle for us to overcome.
How is Lydia getting on apart from that? Do you have a definite diagnosis for her yet, we are still waiting but Isaacs next paed appointment is the beginning of December and I have started keeping notes of everything so I have lots of info and questions ready for when I go which will hopefully give us some more answers.
Take care and let us know how the potty training goes xxx
We're still waiting for the team to call us back in and they're waiting for the dna results to come back from London. It seems to be taking ages, I sort of want it to hurry up just so I can know one way or the other. We went to Mothercare at the weekend and chose knickers etc and have had one successful wee on potty in 3 days and all the rest of the time she is totally upset by the whole thing and it has culminated in her screaming and saying it hurts to sit on her potty. What shall I do?
Just to follow on from last post, it has been a real struggle today, she had an accident in Waitrose, one on the car seat on the way back from Waitrose and then did another wee on the carpet whilst leaning against the sofa. She just doesn't seem to recognise when she needs a wee or even thinks anything of it when she has weed despite wearing knickers. The other thing is she has been off her food since I started her with knickers and potty. I really don't want to upset her if she's not ready or just simply isn't able to feel it. Sorry to go on,
Hi, she sounds exactly like Isaac was when I tried with him, he would scream and get really upset, I phoned the health visitor who said to leave it a while and so far I havent braved trying again, like Lydia he says it hurts when he sits on his potty and seems really upset by the change, unlike the others no amount of encouragement or bribary seems to work. I really dont know what else to try or suggest. Sorry I cant be much help xxx
Thanks for your reply, it does help to know I'm not on my own with this especially with my mum giving it the whole "You were potty trained by 18 months etc etc"
Dont even get me started on the whole "you were potty trained by 18 months" crap, it really winds me up, My other 3 were all trained by now so I am fully aware that he is lagging behind and I dont need reminding by everyone I see. Our children are gorgeous and thats all we need to know xx
Just to say Paul isn't potty trained, for a while he was going for a poo on the potty but this was before we started using Movocol to help his bowel movements as it was almost impossible for him to go in his nappy as he was too constipated due to the muscles in his gut being too weak (TMI but the longer it's in there the more water that is drawn out) and he did feel it as he's scream.
now though we've sorted that problem out he will not sit on the potty with a bare bottom at all, he screams like it is hring him just to sit there its mad, he knows what it's for as he puts his nappy on the potty bless, but he won't use it.
I'm not rushing him though, my mum said I was late with dry nights etc and I have the same muscle problems so I'm just taking it slow. I think he feels it though, sometimes he looks at himself down there when he's about to wee (on the floor) and he goes a bit quiet so hopefully we'll get there soon.
I'm going to switch to pull up pants as soon as he is more upright to see if that gets him feeling like a big boy try and start it again like that
by the way its another thing to put in your DLA form I know it sounds a bit much but it's not just about normal potty training there are other factors for our babies it all adds up.
Hi Chriss, I have Isaacs 2 1/2 year check this week so I am going to quiz my hv about it, Isaac had an eye appointment at the hospital last week and the opthalmologist asked if I was concerned about the fact that he will not engage with anyone and his lack of eye contact, I did explain to her that the physio had mentioned it and was writing to the paed suggesting things like sensory processing disorders and dyspraxia (or dcd) she said she thought he may be autistic spectrum or maybe aspergers. Oh boy something else to worry about, I am seeing the paed in a few more weeks and am really hoping for some answers or at least a common thought frome everyone as they all seem to have differeing opinions on what his problems are at the moment :roll: I might suggest that everyone involved in his care including me and his nursery staff have a meeting then we can all discuss our concerns together as it is really stressing me out having so many differeing views.
Hope you are all doing ok, how is Paul getting on with his walking?
Replies
I am not surprised about that to be honest and in a strange way I feel relieved that some one else has agreed that it is not just him being an 'awkward toddler' she has also said that things like dyspraxia or dcd and hypermobility are very closely linked and all these things fall under the autistic spectrum umbrella. Hopefully when we see the paed again in December we will make some further progress in finding out what is actually wrong.
Keep us posted on how you little ones are doing
Hayley xx
Charlotte
You should go and see CAB or even just telephone the benefits enquiry line (number on the form) to get some help in filling it in as some of the questions are a bit mad.
I went to a government run place called 'The roundabout centre' which specifically helps with benefit forms although after going I could have filled it in my Mypself but was glad of the help.
You have to put all the Dr details on, and often they will contact them, if they don't contact anyone or come back with a refusal, ALWAYS appeal. The care component deals with things like do they need extra care than another child of the same age and it has to be quite significant. so for example, although we don't have a definative diagnosis for Paul, his neurologist describes it as a possible Conjenital Myopathy so that's what I put on the form, I used more paper too at the end to list lots more information about day to day care. List ALL the physio you have to do, or posture correction, how many times a day etc. It is pretty constant with Paul and he also needs re-positioning at night sometimes too as he breathes in his syliva which causes him to wake, or cough things like that. Paul also has special equipment for seating etc so it's always a good idea to try and get an occupational therapy referral.
you guys should phone the enquiry line and just get some general information about the form, they can post one to you too.
Paul will be 2 at the end of November by the way so we don't get mobility but we will be resubmitting our form when he's approaching 3 to see if we are entitled to Mobility as well as the care component.
Hayley 1, don't be put off by your refusal for your husband's application, the child's form is quite different, I was going to claim for myself but was totally put off by the adult form. There is so much you can put in the form for conditions you describe, all about the help they need to stay safe in the home and outdoors etc. Also if you do manage to get DLA and you get tax credits, you can get a suppliment on top. also if you get the high or middle rate of the care component, and if you yourself earn less than ??95 per qeek, you can also claim carers allowance.
We are having loads of bumps at the moment, it's really tight as Paul is trying so hard to get about quickly he is tripping and falling over, he's even chipped a tooth I'm gutted. He doesn't have the reflexes for exmple in his arms (I still don't have them) I don't think it affects me as much as I've obviously learned to at least attempt to break a fall, but when they're little its all about the reflexes and Paul has never really had them.
We've also had a hearing test result the other day that shows he's not hearing quiet sounds, his speech and language specialist thinks it could be related to the fact that he has a significant amount of secretions and stuff, he doesn't caugh it up really so it hangs around a lot more, could be building up I suppose. We've started doing baby sign which is brilliant, he can say so much and we do nursery rhymes and things its loads of fun. I'm pleased we started it a few weeks ago as he's grasped a few key words already. He asked me for More toast for supper, and asked hisdad if they could go outside, and asked if his dad could open the door to see the stars all using signs and words too I was so made up.
He is doing ok at the moment but I think I will phone and at least ask for the forms, it would help us with the cost of his shoes and the cost of travel to all his various appointments if nothing else.
Thanks for all your help xx
sorry don't mean to ramble on about it but I just think so many people don't realise they are entitled to this help. I know how you feel though, I could probably claim DLA for myself but I'm so terrified of being turned down I won't apply, mostly because I have muddled on all this time without knowing that DLA even excisted, how is it different now???
Anyway if you need to chat about the forms when you get them just shout.
I'm loving the signing with Paul, he's really enjoying it and we're collecting a special 'BookStart' pack tomorrow from the library which concentrates on signing v excited.
I just wanted a bit of advice. Are your boys potty trained? Did you have any trouble doing the whole potty training thing? I'm not convinced Lydia is able to even feel she's wanting to wee and poo and obviously I have to help her sit on the potty and help her back up etc etc.
Thanks for any help.
Charlotte
How is Lydia getting on apart from that? Do you have a definite diagnosis for her yet, we are still waiting but Isaacs next paed appointment is the beginning of December and I have started keeping notes of everything so I have lots of info and questions ready for when I go which will hopefully give us some more answers.
Take care and let us know how the potty training goes xxx
Charlotte
Charlotte
Charlotte
now though we've sorted that problem out he will not sit on the potty with a bare bottom at all, he screams like it is hring him just to sit there its mad, he knows what it's for as he puts his nappy on the potty bless, but he won't use it.
I'm not rushing him though, my mum said I was late with dry nights etc and I have the same muscle problems so I'm just taking it slow. I think he feels it though, sometimes he looks at himself down there when he's about to wee (on the floor) and he goes a bit quiet so hopefully we'll get there soon.
I'm going to switch to pull up pants as soon as he is more upright to see if that gets him feeling like a big boy try and start it again like that
by the way its another thing to put in your DLA form I know it sounds a bit much but it's not just about normal potty training there are other factors for our babies it all adds up.
Hope you are all doing ok, how is Paul getting on with his walking?
Hayley xx