Yes I am sooooooo pleased you are on the community team now, that's what we've had from the start it is the BEST thing ever you will feel so much more supported, they organise everything to do with Nursery/Pre-school to make sure if he needs any extra support even if its only a little bit of help they sort it all out. They may also have information on support groups or local groups for you to attend etc
Its good to have the Speech and Language, you'd be surprised what they help with, its not just speech it ranges from feeding skills to speech and general communication and interation, they are very experienced in their field.
Oh I am just so glad for you, and you too Charlotte, don't forget if for any reason they don't accept your claim always appeal it.
I've finally sent it off so keeping fingers crossed. I will definitely appeal if it comes back to me, I just really want someone to come to our home, assess Lydia and suggest things that will make her life easier.
I know what you mean Charlotte, not only do I want someone to come to my house and give me ideas of how to make things easier for Isaac but I want them to see just how hard those difficult days can be so they appreciate the extra time effort and patience you have to put into every little task, that way you wouldnt have to appeal against your dla because they wouldnt refuse it in the first place. I feel very fortunate that Isaac has got the referral to the early years team and his paed is excellent so I know that there is no way I will have to fight to get him the support he needs that way, not sure if this makes sense but as much as I am relieved at having the referral I am also really scared of what it will be like and what his future holds, also the fact that he has this referral just confirms that there is something not right.
We are off to centerparcs now for the week so will speak when we get back. xxx
Charlotte, have you had any referrals for occupational therapy? they are the ones who will assess your circumstances, our OT is good, she showed me theraputic lifting when Paul was small, she arranged seating for feeding, bathing and potty, she will also come to measure up for a Paul hight hand rail to help us get him up the stairs when he's ready to do that. DLA are only going to check the form and maybe write to the dr or consultant they don't do anything else really.
I do hope they come back to you soon.
Hayley1 hope you have a lovely time in centreparcs sounds lovely
Hi, I'm back from my holidays which were fab, just such a pity we have to come home to reality really. Arrived home to find Isaacs dla application form on the mat, OMG what a nightmare, do they make the form like that to put you off applying, I will get round to filling it in eventually but first I have a mountain of washing to attend to :roll: Also got the consent form from the community paed to sign and return so he can be seen and assessed by the early years team, that kind of bought things home with a bump too, the list of people he may have to see, I didnt realise that they would involve social workers and educational phsycologists at this stage, its quite scary really. Hope you are all well and that you hear from the dla soon Charlotte xx
glad your holiday went well, I know exactly what you mean on the post front, we don't go 2-3 days without getting some appt or letter through for Paul it's so much to deal with which is one of the reasons why dla is a must, lots of people just have no idea what extra physical and emotional work you have to deal with i get fed up of trying to expain to friends sometimes although i know i was as oblivious as them before Paul was born.
We haven't got social services yet but i know i could probably get help from them if needed, they're all there to help you, it's a long list of professionals but it'll be better in the long run.
don't be put off by the form it's not that bad when you get going, and phone the advice line if you get stuck on the timing questions, make sure all the things you put down are for 7 days a week, you can say at the end if he is better some days than others but as a rule its every day.
anyway I hope you get on ok with it all soeak to you soon xxx
Know what you mean about the hospital letters, funny how from the top of the stairs I can tell which one is a hospital letter lying on the doormat, how sad is that. Although I had another shock yesterday when the post came, Isaac has been sent an appointment for an EEG, I knew that would be coming as the paed wants to make 100% certain that his 'trance like moments' atrent caused by epilepsy, he said it is highly unlikely as they last too long but wants to be certain, the shock for me is that it is at Addenbrookes and I have to go to the nuerology department, trouble is with all the dealings we have had with them for Phil and all the errors they have made, including telling us he was going to die, I have no desire to be there, I phoned the paed yesterday but he wasnt at the hospital so I now have to wait till Monday to find out if I can be referred somewhere else. I feel really stupid but the thought of going back into that hospital department with my baby just upsets me so much, I really don't think I will be able to do it.
Fingers crossed we will be able to go somewhere else or I may just end up in the loony bin x
Oh no that sounds awful, hope you get it sorted out today, I find it bizzarre that you wouldnt automatically be sent to a childrens hospital it really is a postcode lottery where medical help is involved I can see that so much from chatting on here.
fingers crossed you'll get somewhere else, and if you don't, just go in there and lay down the law you can do it, you're a super mummy
I would have to insist you went elsewhere if you have no confidence in that particular hospital and I think it is your right to at least request it. Let us know how you get on.
I was in the kitchen today and Lydia was playing in the front room. I was half listening to her and half making myself a cuppa and I heard her shout "JESUS!" Immediately I rushed in and asked her why she had said that and then realised she was role playing with our nativity set, doh!!!!
still waiting for the paed to get back to me, I am going to phone again tomorrow althogh I did speak to my hv yesterday and she said there is no where else local that he could go ( I guess I will just have to pull myself together and be grown up about it. Have you heard anything back about your dla claim yet, when I spoke to hv about mine she advised leaving it until I have seen the early years team as she doesnt think I will get anywhere until they are involved, she said they will help me fill the forms in to so that is a big help.
at Lydia role playing in the kitchen with the nativity that is so sweet, Isaac doesnt do role play so I miss out on all of that but Alice used have me in fits with hers.
DLA wrote back on Monday and said they were dealing with Lydia's claim and that if I hadn't heard anything within eight weeks then I had to contact them. She had physio today and they have said they're pleased with her walking but that they now need to concentrate on the spine. We have new exercises and they are contacting orthotics to see if they have any braces or suits she can wear which which help with her posture.
Charlotte, that sounds like their standard letter hope you get it sorted out, don't forget always appeal sounds to me like you should probably be entitled to the middle rate at least fingers crossed.
Glad about Lydia's physio, what have they said about her spine? does she have Lordosis when she's walking? Paul has that, he has a strait spine but his posture is so poor when he walks as his trunk is just very weak so his back curves in a lot. I have to try and get him to correct his posture wherever possible (although I know I still do this myself so not holding out too much hope that we can do much with him till he's stronger) we have to tickle his tummy so he tightens his muscles, and try and get him to walk along pushing something in front of him so he has to lean over slightly.
She has scoliosis of the spine so it's really curved and had even started to push the rib cage out. The hospital are monitoring it so I'm happy she'll get the support she needs. x
Hi Ladies, Just though I would pop on and wish you a very happy Christmas and Happy new year too, we are at home for Christmas, just us and the children which will be lovely, I don't know whos more excited me or the children.
All our snow is melting, it rained last night then froze so the roads and paths were like a death trap today, but it was warmer today so I defo think it will be all gone by tomorrow, such a shame I would have loved snow on Christmas day.
Had a great day thanks, hope yours all went well, at home Christmas day just us and the children which was lovely, we went to my brothers today and finally after having his licence back for nearly 6 weeks Phil said he would drive so I had a couple of drinks to make sure he didnt chicken out can't believe how quickly it goes, this time next week it will be next year Don't want Thursday to come as that is the day Isaac has his EEG and I'm really not looking forward to that, Phil will come with us but he wont be able to come in with us whilst they are doing it as the strobe lights and flashing lights they use could trigger off a fit in him and he has only just got his driving licence back after the last one, wish me luck, also got Isaacs letter of confirmation from the early years team saying they will be discussing his case at the next meeting so Ishould hear fairly soon about that too, its all go.
Replies
Its good to have the Speech and Language, you'd be surprised what they help with, its not just speech it ranges from feeding skills to speech and general communication and interation, they are very experienced in their field.
Oh I am just so glad for you, and you too Charlotte, don't forget if for any reason they don't accept your claim always appeal it.
We are off to centerparcs now for the week so will speak when we get back. xxx
I do hope they come back to you soon.
Hayley1 hope you have a lovely time in centreparcs sounds lovely
We haven't got social services yet but i know i could probably get help from them if needed, they're all there to help you, it's a long list of professionals but it'll be better in the long run.
don't be put off by the form it's not that bad when you get going, and phone the advice line if you get stuck on the timing questions, make sure all the things you put down are for 7 days a week, you can say at the end if he is better some days than others but as a rule its every day.
anyway I hope you get on ok with it all soeak to you soon xxx
Fingers crossed we will be able to go somewhere else or I may just end up in the loony bin x
fingers crossed you'll get somewhere else, and if you don't, just go in there and lay down the law you can do it, you're a super mummy
I was in the kitchen today and Lydia was playing in the front room. I was half listening to her and half making myself a cuppa and I heard her shout "JESUS!" Immediately I rushed in and asked her why she had said that and then realised she was role playing with our nativity set, doh!!!!
Glad about Lydia's physio, what have they said about her spine? does she have Lordosis when she's walking? Paul has that, he has a strait spine but his posture is so poor when he walks as his trunk is just very weak so his back curves in a lot. I have to try and get him to correct his posture wherever possible (although I know I still do this myself so not holding out too much hope that we can do much with him till he's stronger) we have to tickle his tummy so he tightens his muscles, and try and get him to walk along pushing something in front of him so he has to lean over slightly.
Have a good one, catch up soon
Hayley xxx
Charlotte