Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

Hi goneHaywire I was in pieces at the start when DD2 was having the seizures and we were going for lots of test and had no diagnosis. then when we found out she had CP, it felt like my world caved in. I took the call from the paed at work in an open plan office .

IME the weight has definitely started to lift as DD2 has gotten older. She's 2 years 8 months and we found out about her CP at about 13 months-ish. She has an infectious personality and is deliriously happy, and we measure her development by our own milestones and threw the red book out the window.

But. I absolutely weep now at everything relating to kids with disabilities or SN. Because I feel it all touches me so personally. Any documentary on TV, a girl I don't know with CP at another school taking part in sports day for the first time etc. So emotionally I think I'm still very fragile, but I feel strong when I'm doing 'stuff'.

Please, please do talk about the emotions on here because even if it's not been mentioned, your feelings will resonate with many posters and lurkers . Belated welcome to the thread!

Thanks everyday And silver. Well done for getting a statement too !

It's amazing what a good night sleep does. My nan always used to tell me "things will seem better in the morning" and this is true today.
I was feeling very low the last few days, (i get like it every now and then ) all the above swirling round in my mind, then our swimming lesson which is fab but made me sad as all little summers classmates are toddling around and able to climb out. Stupid because they have been toddling for ages. Had a good cry and a good night sleep followed by a session for our private physio who is amazing.
She helped me see the real progress of dd. Transitioning from sitting to side sitting to bunny, hands and knees we talked through all our options.

sometimes it's hard to see the progress when you are with them day in and day out. Anyway, plan of attack is Going to continue with ABM and Bowen with the aim of Bobath in the next few months. Hurrah a decision !
Thanks again !

Summer so glad you are feeling happier xx It helps to talk on here when we might be feeling low, doesn't it? Sound like your DD is doing great .

Thanks everyday

My internet has been down for a week but glad to read some pretty positive comments..

Regarding extra therapies etc my main advice is get them going NOW! Once school or ft nursery starts the time is soooo limited. It's frustrating trying to get anything done after school and fitting therapies in during school time is very difficult. It has to be official hydro or RDA to be allowed.

Hi everybody, I am new to mumsnet and would like to join the thread. I have a 2 year old boy with spastic diplegia, as a consequence of being born at 30 weeks. He is 4 point crawling, pulling up to stand (though not using the technique the physio likes) and cruising he can sit but hates it (doesn't get into sitting though) and prefers to kneel/sit on legs with them spread out). He has a walker that he pushes in front of him but is soon going to have a walker that he pulls behind him. He is doing really well and it seems that he just has problems with physical ability, though he will get a bayley's (bailey?) test soon. Despite it all he is a very happy boy and really likes playing with cars./trains, watching mr tumble and playing with his toy food/kitchen sets.

I would like to ask for other people's advice on things like education and nurseries/childminders though I don't want to hijack the thread, so let me know if I should start a new thread. My boy is currently at nursery 2 days per week, while I work and is on early years action plus, which means he gets 7.5 hours of extra support time, during term time (though he attends all year round). What provision do you get for your children? I am also looking at statements (though paed says he wouldn't get one with just a physical need). I also see that the SEN provision is changing. Would he get in under the new system?

I am worried about school and to a lesser extent, nursery, as he grows, the ratios go higher and (I guess no suprises to you all here as you know about CP) is unsteady on his feet - he regularly loses balance and lets go when standing holding on to furniture/walker and so I always have to be behind him. Physically how "bad" do you need to be to get more 1:1 support/statement/education and health care plan??

Thanks

Hi chocolate. No need to start your own thread. Firstly bayleys is as useful as a chocolate teapot when you already have a diagnosis. Well it was in my experience and the experience of everyone else I know with prem children with disabilities. Ds did it standing up and nearly 2 years later he still can't really stand.

Second it's absolutely rubbish that children with physical disabilities can't get statements. Without a statement many physically disabled children can't access education, and that's how it all has to be phrased. Ds has just got full time 1-1 and was very similar to your ds at that age. The 1-1 covers all breaks too. Your paed will need to support this ideally but you can do it without their support, provided you have evidence to back up what you want, we used physio and ot as well as the nursery (I wrote the nursery report for them, they signed it.). Ds uses a walker and tripod sticks language ok but a tiny bit delayed (not enough to ge any support) fine motor ditto. But he can't get to the activities, the bathroom etc without the 1-1 being available. He also can't walk when they go to the library etc (he uses his trike now). Talk to the nursery about what they think and then make a parental request. Pm me if you want to see what we said. For a variety of reasons we didn't get the indie school we wanted but we did convince the assessment team to pay for it if it as worked out!

Finally he now gets 25 hours at nursery so 5 hours per day from the early years funding. Not from statement

Thanks everysilverlining. I will ask physio and ot tosee what they think of current level of funding. DS just started action plus funding and has just had unfunded half term. Fell over 3 times in his 2 days at nursery, which is noy good but could have done this during term time as he does not get a support worker for full days?. Can I ask if you have funding for school holidays or just term time? What do you do? Have read nursery terms and conditions and nothing there about provision for disabledchildren. I am thinking of possible routes and one is to pay extra maybe for support worker time, however I wouldnt have to do this for an ablebodied child and I hve already paid the daily fee for childcare, so would be out of pocket more. Is this discrimination or do I just accept that you have to pay more for disabledchildren because of the higher level of care? I havee already thought of asking my employer to work term time only (so not guaranteed) but we have other thingsgoing on on other days, like portage and special needs group (arranged by paed so not just a toddler group) and hydrotherapy (when it is available). I am not sure what nursery will think ofgetting more funding as he has managed to get his physio done each of the two half term days, which is good. Why does it all seem that you/have to fight for things? I really need my 2days at work to get a change and DS loves nursery too.

Hi ChocolateisHeaven1. Excellent NN! Welcome to the thread, you are in precisely the right place and asking all the right questions . There's lots going on in you posts (understandably) so I'll let you know how it's all worked out for us (similar position).

DD2 has asymetric bilateral spastic CP. So she's has high tone on both sides, but one side is affected more. She is 2 years 9 months and has only just started some unsupported walking for short distances.

DD2 has a Statement of Educational Need. I applied for a Statutory Assessment direct to the LEA (parental application) and the LEA then ask for reports from each of the professionals involved with the child. So for DD2 that was the Paed, SaLT, OT, Physio, Portage and Child Psychologist. Neither one of these independently support or 'reject' the application for a Statement, they only report on their professional aspect of the child's abilities and difficulties. It is for the LEA to decide whether a Statement is required. It makes me so cross that your Paed said that your DS 'won't get a statement' - it's (a) not his call and (b) he is incorrect in his assertion that a physical disability alone is insufficient to 'qualify' for a statement. So ignore everyone and apply for a Statutory Assessment . Don't wait for the new system to kick in, go ahead and apply under the current system. (New system might be delayed, might have teething difficulties etc, and there is no need to wait any longer ). Our DD2 has 1:1 provision in her Statement and it went through in standard timescale (6 months?) without one hitch. I recommend the IPSEA guide to help you with your application, here:

www.ipsea.org.uk/What-you-need-to-know/SEN/Statutory-assessment.aspx

Next, funding stuff. I refuse to get drawn into discussing funding with any of the professionals or agencies, and to be honest nobody has really wanted to discuss this with us either! DD2 needs a certain level of additional support (as declared by the LEA on her Statement) to enable her to access the eduction that she is entitled to. How the 'authorities' work together to enable that to happen, and how they fund it is outside of my interest, so long as DD2 is being correctly supported. In our case, the nursery applied (after seeking my approval, which of course I gave) through the Birth-to-Five service (possibly called something else in your County) and based on her statement, the Birth-to-Five service agreed to fund the staffing to allow the nursery to provide the 1:1 provision for 15 hours/per week (15 hours being the full time early years provision). I still pay the nursery the normal nursery fee like everyone else, but unlike all the other kids, DD2's Key worker, supports her on a 1:1 basis. I suspect our Birth-to-Five funding is the same as Everysilverlining's Early Years Funding. Our Birth-to-Five service fund term time only, but I have an excellent nursery who are happy to cover to holiday's for us. Linky to our Birth-to-Five service, so you can perhaps find similar in your area:

www.birthtofive.org.uk

Next, having a child with a disability(s) does cost more. You shouldn't be covering the cost of enabling your DS to access his RIGHT to early years education over and above the costs associated for an NT child. Yes, I think that would be discrimination. But additional costs come from car journey's to therapy appts, paying for hospital parking, buying adapted bikes, sledges etc. And for this reason you need to apply for Disability Living Allowance (DLA) if you have not already done so. DLA would also help if you wanted to reduce your work hours to help support your DS. A guide to eligibility criteria and application form at this link, here:

www.gov.uk/disability-living-allowance-children

Additionally, depending on the number of hours you work, you may also be entitled to Carer's Allowance. You'll see links for Carer's Allowance from the page linked above.

You re spright about fighting for everything. It's rubbish because we as the 'end-user/consumer' of the service have to become experts in all this stuff just to ensure our right to access what we are entitled to is upheld . In saying that, I've found the provision in Lincolnshire to be superb, and talking to others on this thread and seeing other comments in the main SN:Children topic, I think Lincs are absolutely marvellous in comparison. I'm going to stop there as I've rambled on enough in this post . Lots of reading for you, but come back for more chat and advice if needed. Sorry if any of that was teaching you to suck eggs…..

Pants, forgot to enable links:

www.ipsea.org.uk/What-you-need-to-know/SEN/Statutory-assessment.aspx

www.birthtofive.org.uk

www.gov.uk/disability-living-allowance-children

Just to say welcome chocolate and it is absurd to say a physical disability precludes a statement!

And everyday has said all there is to say very comprehensively. So 'weeeelll done!' as all the irritating vtech toys seem to say

we have all those irritating vetch toys too….sometimes they go missing

Hi, just to add we get early years funding in term time and holidays as ds in nursery full time. Was never an issue. We'll have to get a nanny when he starts school though!

Chocolate just checking in to see how you are doing

and to assure myself that I've not scared you off with my mahoosive post

Hi everyday, thanks for your very helpful post. I just hadnt replied to you yet - thanks for posting again to see how i am doing. I had previously applied for dla and now have that but dont qualify for carer allowance. I am going to llook at the information in the links you have provided. I have discussed issues with portage and they mentined fair access to short breaks and direct payments, which I could use to pay for 1:1 time for school holidays. Also mentioned thay nursery could try and apply for more funded hours for term time. I am going to discuss this with nursery, so maybe will get or get nearer the 15 hours 1:1 funding for early years education. I also discussed statements and portage saidthat children who get statements at an early age (before school) are those that go on to special schools. Thanks to everysilver and sneeze for posts too - I see that paed is wrong and am concerned by this - arent the professionals meant to be onour side? I would apprecitate it if anybody minds saying if their statemented child is in special nursery or mainstream or destined for special school, though I understand it is a sensitive subject and so completely understand if you would rather not say. Can I also ask what is the difference between getting the full 15 hours of early years education with1:! Funded on early years action plus or with 1:1 via a statement? Thanks in advance all

Hi chocolateisheaven1

I have a dd with quadriplegic cp who could not stand unaided and was a wobbly sitter when at nursery age- she is now 13 years old and can walk with afos and uses a wheelchair for longer distances or when she is tired or about independently.
I applied for a statement of special educational needs before my dd started her '15' hours ( it was only 12 when she went) Nursery Educational Grant hours and would suggest that whatever any professionals tell you- you do the same( check out this thread and threads with everyday/Chatee on).
My reasons for suggesting this are:
a Statement of special educational needs is currently the legal document that is used to ensure that a child's needs are met( some authorities are trialling EHC plans and there is a bill going through parliament at the moment so it looks like EHC Plans will be the 'new' things but as it stands today the Statement is the only document that protects your child enhanced support- check out the IPSEA website they have lots of draft letters for you to use and then send to the head of children's services at your local authority.
Do not rely on nursery staff to do this you need to do it yourself as there is money available through Early Years Funding/ Early intervention programmes for children of pre school age that settings can apply for more easily than applying for a statement- that's great for the nursery as they can access the funding quicker to help support them in cAring for your child but then that's it - in their eyes job done, they have the funding until your child leaves nursery and will support to the best of their ability.
The problem is then your child enters school with no extra support and it is then much harder for the school to apply as that is when the authority expect the school to have 'jumped through hoops' to document evidence/delay sending in advisory teachers( if your county still has them!) then change' the goal posts' etc etc.

And the answer to your question

Yes my dd was statement end during her pre school years, yes she attended the local pre school and yes she attended the local mainstream primary school ( with the head teacher being very demanding and ensuring ramps/ disabled toilet/ accessible changing area/ accessible infant size toilet were all in place before she started like everyone else in the September- and this was from only knowing she would be going to that school from the April as it wasn't officially our catchment school).my dd now attends our local secondary mainstream school- as do children who are more severely disabled with their learning so please do not listen to 'so' called professionals who give inaccurate information or spread local 'bye laws'.
The advice on IPSEA, SOS SEN, Contact a Family and Mumsnet( from parents who have been there and professionals who share their info) is always worth double checking with what you have been told.

Keep posting and good luck with your statement application - if you need any more advice just ask( sorry I can't link to the previous posts about this but in a rush)
X

Chocolate, I concur with all that chatee has said x

To answer your question, dd2 has been accepted into a mainstream primary from sep 14. She's going into the schools nursery but continuing in there for primary education. So utter rubbish that statements are ONLY for special school access -they are needed to get the right support in mainstream too. However, I do know that to access the SS round here, a statement is a pre-requisite.

Sorry have run for our IEP review at nursery, but will check back later xx

Hi again. My ds has early years funding and it does cover more than the 15 hours and all holidays. It's ben in place in ds mainstream nursery since ds was about 10 months although the amounts have varied, so it is certainly not just for the 15 hours which are funded. So in my area to say that's all you get is crap.

Ds is in a mainstream setting and always has been. He is going to a mainstream school his needs are all disability related rather than educational, as he doesn't have problems learning as per his peers he just can't walk or use his legs, core, or to some extent hands as well as others. But there was no question at any stage that he wouldn't get a statement. Until last year we probably wouldn't have applied but we did as the system in my county used to run a medical hours system which worked for most children with cp as the needs were medical, physio, ot etc rather than educational, but ds needs 1-1 to access everything. We applied ourselves but knew everyone would support us, we did also use some private reports though. So far my lea has been fantastic though and I don't recognise many of the posts from others though. I thought about saying my area was a good one on the other thread but then I remembered all the things which had gone wrong over the years (crap communication on diagnosis, wrong diagnosis on report to gosh, lost MRI, no hydro, no riding for disabled at all, patronising paed, crap orthotics department usually wrong prescription, slow referrals, non-existant ot or salt) and remembered it is all swings and roundabouts

Hi silver! Phone about to give up the ghost here so just a quick one. That's great that you're getting more than the 15 hours. I wish ours would. It's bizarre we all live in the same country but like most provisions, it's a postcode lottery. But still, your example shows that more hours are indeed possible and parents should not restrict themselves to just asking for the standard 15 hours xx

Just about to go off to bed, but wanted to give a quiet little shout out to goneHaywire. Hope you're doing alright and are managing to get your dd nap times sorted . Meant to say, we try to get morning therapy/paed/swimming appointments too, so it's home for lunch, then a nap (and a rest for mummy ).

It can be tough going when your kid(s) are still really little. Have you any support groups in your area? I know that the charity Scope have socials in our area, but I've not been yet. I think meeting and talking to RL folks who have kids with similar needs can help a lot. Stay on here with us too xx

Hiya!
Just popping in to share dd1's latest accomplishment. She has spastic diplegia. My husband and I are passionate skiers and this season, with dd1 being 5 and dd2 being 2.5, we wanted to go on our first skiing holiday together as a family.
I was worried about everything: Will she tolerate the helmet and goggles? Will she freak out when we put the ski boots on and she realizes she can only clonk around in them in a very bumpy manner? Will she scream murder as soon as she starts moving on the skis? How on earth will we get on and off the lifts???
But we wanted to give it a go anyway. And it was absolutely fine.

madwoman I don't know if you remember, but quite a while ago I asked a lot of questions about skiing wrt my dd and you gave me lots of really good advice. Thank you so much, it made me much more optimistic about what to expect than I would have been otherwise.
By the end of the week, both girls went down the entire length of the nursery slope (the snow was quite sticky that day), which exceeded our greatest hopes by miles! And the only aid dd1 used was a tip clip connector so that her skis couldn't cross over and remained in a slight snowplough position.

Whether or not dd1 would ever be able to ski (without major adaptations) was always one of the big question marks in our lives since her diagnosis. Dh and I are so very happy that it appears she will be fine on skis, that she really enjoyed herself and that we will always be able to share this wonderful sport as a family. Furthermore, it was amazing seeing her confidence grow so much over such a short period of time!
Oh and when she complained to me a couple of days ago that she is never at the front of the queue in the school playground because she can't run as fast as the others, I was able to remind her that she will be a better skier than most of them though!

I'm not sure if DGS had a statement for nursery, it's not my department though I know about the school one

But he had 15 hours in a nursery with a small SN section, a specialist chair, physio went in on a regular basis and 2-1 care. (Also mixed with NT children of course). That sounds statementy to me.

Have text DD but she is at 'creation station' with the babe who looks on in bewilderment at the other babies, eats the paint, and brings home virulent viruses really enjoys himself!

He is now at MS school with a full statement and tons of input. He has very high needs but they are fully covered in the statement. Always push for MS.

Yes. Statemented for nursery. Baby in car sleeping of all his creating stationing

Hi Jokat! Wow, your family skiing sounds brilliant! I'm so pleased it went well. I wasn't one of your 'skiing advisors' it's been many years since I slid down a slope, but I remember how fun it was, so I'm glad this is going to be something you can all enjoy as a family x

Thank you everyday
I should point out that dd1 was not going down in turns, she just went straight down and one of us would catch her. Although she did manage to change direction when my mum, who was supposed to catch her that time, ran across the bottom of the slope in order to get away from dd2 (who then tried to follow her), as dd1 was in real danger of ploughing straight into her! Dd1 did change course and got to my mum without causing an accident.