Support/Information sharing thread for parents of children with CP - part 3

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So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

Thanks Everyday that's all so positive! (except for the 3-4 month wait...shame... but sounds like not many downsides to the treatment which is good) Great to hear she is so happy at school and about the good senior school experiences.

Unfortunately DD1 is horribly competitive gets it from DH no matter how much I stress that winning isn't important, so I don't think she'll react too well to lagging behind - she hasn't realised she is any different yet, possibly because she's old in her year so that disguises the fact she's behind for her age, and possibly because there's nothing she completely can't do, it's more that she is wobblier/slower/gets more tired. Anyway no point worrying till it happens I guess, just mentally debating whether it will be better for us to raise it with her or wait till she notices...

Out of interest how did you choose a school for DD2? what did you look for? We have to choose a school for DD soon.

On the plus side, DD's behaviour has been angelic (well relatively, she's still 3 ) this past week, I think the break from nursery over Christmas and lots of TV "downtime" did wonders for her. Physio said she seems much stronger and more stable too

Sounds like you have a really strong girl there - a quality that will serve her well

We visited schools and I met with the SENCO who is also the Early Years class teacher. I looked at access, their outlook on integration, listened to what they considered they would need/prepared to do to accommodate DD2 etc. We went a bit on the Ofstead report (which is superb) but more on a subjective feel for the school. We visited a Special School too, to fully compare provision. I think it comes down to gut instinct and see how it goes.

The SENCO/class teacher (same person) was brilliant. Visited us at home (as per all children in the class) but also visited us in DD2's nursery setting 2 or 3 times to get a full handover from the nursery staff. I applied for DD2's statement assessment, and the school recruited a TA, paid for by the LA, on the basis of it.

All very positive on your side too - improvements in strength and stability are excellent advances. Our DD2 needs lots of rest too, and it sounds like your DD has enjoyed her break and is going back refreshed.

Cerebra are a wonderful charity that works on behalf of children with neurological conditions. They have lots of good info. Here is a link to their guides for parents. I found the DLA guide indispensable when applying for DLA for DD2, and used the Special Educational Need one along with the IPSEA guidance (link to IPSEA is available on the Cerebra SEN guide for parents link) when I applied for her Statement (now EHCP).

w3.cerebra.org.uk/help-and-information/guides-for-parents/

IPSEA link that will help if you want to apply for an Assessment of Special Educational Need:

www.ipsea.org.uk

Assessment of Special Educational Need is now known as an EHC Assessment (Education, Health and Care Assessment). I'm behind the drag curve .

My dd still doesn't acknowledge fully that she is different (she is almost 4 and due to start reception this coming September). And we won't raise it until she notices. She sees herself as exactly the same as her little buddies, sister and cousins etc and I want it to stay like this for as long as possible, She thinks she can walk (well she can with her frame) and she couldn't understand why she couldn't join in ice-skating with her older sister during the Christmas holidays.
She too is utterly competitive ( which certainly helps with motivating her for physio ) but I am dreading the day when she realises that there are something's she can't do as well as her peers and that her diabilitty does have limitations to a certain degree. Although saying that, Our outlook for her is to treat her like her sister, encourage her to do any activity she wants and help her to achieve but most importantly enjoy herself.

Back to your previous post minipie dd gets painful legs from time to time, and when she does it is mainly at night. DD has variable tone meaning she is not stiff all the time but during growth spurts her legs are noticeably stiffer and this is when she complains of the pain. I find hot baths, massage, stretching and a hot water bottle helps.

everday your dd experiences of reception so far are really reassuring and so lovely to read. To say I am anxious about school is a total understatement. I am soooooooo anxious and teary about the prospect of her starting school and being the different one. I am all in a jitter and it's still bloody 9 months away I have got to get a grip!
We are in the process of transferring her statement over to an EHCP and dd will be needing 1:1 support so I might be along to pick your brains at some point. Perhaps when that is all in place I will start to feel a bit calmer!

Also minipie it's also worth applying for DLA (disability living allowance). You can spend it how you like, We use ours to fund DD private physio. The forms are long winded but worth it as without it additional therapies would not be possible.

Thank you both! I will have a look at the cerebra links thanks. I assumed we wouldn't get DLA at the moment would we, as DD's only extra care needs are that she needs more help dressing and eating than the average 3yo and needs to go in the buggy more... and all of that is still fairly normal for a 3yo ie it's not like it takes hours extra to look after her. Might be different if she still needs help dressing and eating at age 4/5 etc, but not at 3. Or am I being too pessimistic?

Summer thanks for the tips about painful legs. Yes I think DD's may be linked to growth spurts too. She would love a hot water bottle - trouble is if I do it once she'll want it every night gah!

School... What makes it more complicated is we are going private (all remotely good state schools are ridiculously oversubscribed near me, applicants have to live within spitting distance, we don't). So, no SENCO, no statement process, no mechanism for getting extra funding if extra support is needed... Agh. I'm not sure how to tell which of the local private schools will genuinely welcome a child with some physical limitations and which will sound all PC but would actually secretly prefer she went elsewhere. (I'm guessing we should probably write off the one which selectively assesses 3yo applicants and has a reputation for being very pushy!)

Hi Summer! Thanks for coming on with lots of good experience to share. Honestly, my kids love primary school, and the care and inclusion we've had for DD2 is just lovely. No exaggeration. DD2 got a teacher's certificate for trying really hard and being a happy member of the class - she was so proud to be awarded it by the Head at assembly [might be a tear in my eye] Any questions, ask away .

Minipie I think we've had mid-level care DLA since DD2 was about 2. If your child has care needs beyond that normally expected for their age, then you can apply for DLA on their behalf. It is also non-means tested. I've used DD2's DLA to buy her Tomcat Trike, the cerebra sledge, and adaptions for the house. I haven't applied for the mobility element, as I don't feel that she qualifies and I'd feel uncomfortable claiming this for her (even though she occasionally uses a wheelchair). I agree with summer that the forms are soul destroying, but that cerebra guide is excellent.

Gosh, I have no idea about provision at a private school or how you apply for it. I guess lots of visits and ask them what they can do. Can any friends give a recommendation? Go with your instinct .

Ok, I've had a look through the Cerebra guide and it is good but I'm still confused. There is lots of stuff DD needs help with, but most of it is normal for a 3 year old - eg she needs help to wash her hair and brush her teeth but surely so do all 3 year olds? Then there are other areas where she does need more help than average eg up and down stairs. However there's quite a few areas where I don't know whether an average 3yo would need less help.

Do I need to know what is normal and what is extra help? Or do I just fill in where she needs help, and the govt will decide whether it's normal or sufficiently above what's normal?

SEN provision at private school - basically there is none, it seems, in most cases. Hence I now wish we'd moved to somewhere inside the tiny state school catchments... I guess I will have to ask some questions and see how the answers sound. Not sure what questions to ask though - any ideas welcome!

There is one private school near us which is actually amazing for SEN, they have a policy of 10% of their intake having some (mild) SEN, there is a full time OT and SALT and a therapy room onsite... all great BUT it's a real headache to get to and it's not so great academically (and I think DD is going to be academic, as far as I can tell)... So it may come down to, do we choose the best school for her CP or the best school for the rest of her, iyswim?

Summer I'm glad your DD hasn't noticed she can't do quite as much. Know what you mean about dreading the day she does though. DD has a baby sister, who at some point will overtake her physically - I guess at least by then DD1 will be old enough to understand.

I think I only detailed on the DLA form the extra help - so detailed how far she could walk, and what we needed to do when we had to exceed that point (carry her, or wheelchair), DD2 couldn't climb stairs at 2YO, couldn't sit unaided, couldn't crawl, couldn't self feed/hold a spoon or fork (some finger food was OK independently), couldn't dress or undress at all independently (I would expect an NT 2YO would be able to pull off socks and slip out of pyjama bottoms etc) - these were all things I thought a 2YO should be able to do.

If your DD is in a nursery, they might be able to help identify the areas where they are giving her extra help too.

I think if in doubt, put it on the form - the assessor can always use their discretion to discount the stated need for a particular activity as age-related rather than 'extra help'. Im not a DLA form guru though, hopefully someone else will pop on and give some advice too x

I don't have first hand knowledge of private schools but from the limited knowledge I do have is that they don't tend to have SEN provision.

It is a really tricky one on what school to choose. I think the CP needs to be taken into account to certain extent but not entirely, particularly if you feel dd will be quite academic. For me, we have chosen our local school based on the fact that the SENCO seems very knowledgeable and capable, it has great access, they already have a wheelchair user but importantly it is where DD1 goes which is important to us as a family.

If you can get your dd statemented (or an EHCP as it is now known) outlining what support etc she will need when in school setting, you should be able to name a school which you feel best for your dd. The child with a statement then will take priority over the distance/sibling rule so if you feel your local state is suited for dd this may be a route in.

Alternatively you could also apply for your local school on the grounds of social, medical reasons this also takes priority over distance and siblings. For example local school, short travel distance due to mobility issues etc.

It is a minefield, I am not sure we are doing the right thing and only time will tell, so I am just going to go with what feels right at this moment. And hope it is the right route.

Keep us posted on what you decide.

We couldn't find a private school that would take dd2. She has an iq of 142 (tested at 5 for something else - we needed a full Ed psych assessment, and it just came up). The moment I mentioned the cp to any private school all bets were off. So she has been in state all the way through. No other choice. (To be fair, it was probably for the best - we can't afford to send all three, anyway.)
We've not had any issues with bullying at all (in fact she is the kid most likely to stand up for anyone getting bullied - an overdeveloped sense of justice for sure!) She has always known she is different, though - but has steadfastly insisted on taking part in everything. The only abject failures we have come across so far are ice skating and tap dancing although it damn near killed her to admit defeat. She skis black runs and goes to ballet class.

Thanks both. You see this does highlight that DD is really mildly affected, she actually can do most of the things an NT 3year old can do, it's just that she finds it harder and/or is more reluctant. So on a good day she can do a pretty good job of undressing, putting on own pants and t shirt, climbing stairs, using fork and spoon etc. On a bad day I have to do it all for her. The thing is we only have good days about 40% of the time because she gets so tired, so maybe I should claim for how she is on a tired day. But the tiredness is not just due to CP, it's also because she doesn't sleep enough so does that count? Sorry you can see I am going round in circles! Nursery don't give her extra help afaik, they mainly just get her to do something quiet when she is tired.

I think I will file the DLA idea away for now and think about it when she is a bit older and it's clearer what skills are going to be tricky long term. We are financially pretty comfortable anyway so would feel a bit guilty about claiming.

Again because she's so mildly affected I do think the CP shouldn't rule the school choice but on the other hand it does need to be a sympathetic school who won't just see her as being lazy or difficult (because her CP is not very visible I think this is a danger). I did think about the state entry on medical grounds summer but again I doubt she is severe enough? Probably wouldn't get a statement for her I suspect - I am hoping she won't need much extra help at school (but I may be being over optimistic here)

Sorry I am thinking out loud. It's all very new to me and very helpful to hear your experiences, thanks

cross posted madwoman

really? amazed the private schools were not at least outwardly more welcoming than that! That is very worrying as we are really not likely to get in to any of the nearby state schools. Right, sounds like I need to have the conversation with them sooner rather than later. Actually first I think I will see if I can speak to nursery school head who knows the local schools very well.

DH will be delighted to hear your DD can ski so far that has been one of his main concerns about the diagnosis . Regarding ice skating, I hear they now have support frames available (like walking frame but for ice), for wobbly skaters... worth a try if she still cares?!

Mini - just reading your post now. Yes, you fill in the DLA form for 'a bad day'.

Yip, lack of sleep counts. Nursery provides rest provision during the day - you might need this for school too. Early Years setting normally have a quiet area so this isn't a drama, but I have it noted on DD2 Statement.

Thinking aloud is allowed . Seeing it written down, sometimes helps us form new ideas or opinions.

Good point Summer: we got prioritised on a placement outside our catchment due to the SEN diagnosis. I forgot about that.

Madwoman that is frankly disgusting that public schools (at best) neither cater for or (at worse) actively exclude children with SEN. Surely that's against the law under the Equality Act? But then, I probably wouldn't fight it as I wouldn't want to trust my child's care and well-being to such an environment .

Sorry Madwoman my post seemed a bit abrupt there. Hello matey, nice to see you again lol.

You can enter the state system on medical/social grounds without having a statement. We did for dd1. When dd2 was born, long hospital stay, came home on oxygen and all the developmental delays etc and the stresses it brought my dd1 was in a nursery attached to a school. But Being in the nursery didn't guarantee a reception place, she was very settled and Our GP and HV provided a letter detailing dd2s issues agreeing that it was important for dd1 to stay in her current setting so as not to cause any further stress/worry.

It would certainly be worth trying that route if the nearest state school is best for dd. The worse that can happen is that you get turned down. But if you did get a place you can then you have options and can make your final decision always declining the offer if necessary?

waves madwoman

Thanks summer I will bear it in mind if the private ones seem unpromising. Had a chat with nursery school today and they seemed to think one of them would be good - they know it well and it is my favourite anyway so that is hopeful. That's great that your DD1 was able to stay at her nice school - I wouldn't have thought of asking on grounds of family stress but you're right that is exactly when these exceptional grounds are needed.

Nursery school are asking if there is anything specific they should be doing to help DD - at present I can't think of anything except for being aware when she is tired because she is more likely to misbehave and letting her sit down if she needs to. Any other ideas? I need to ask an OT really but suspect it will be a looong time before we see one.

Have you seen a physio? if so and she has stretches/exercises then you could ask nursery to do these with dd once they have been shown how.

It might be an idea to ask for an OT referral sooner rather than later. We have just moved areas and were told there was a 10 week wait. We have now been waiting 14

Had a really lovely dream last night. I dreamt that we were at DH work place visiting and across the room, dd got up and started walking and then running. Not in a typical style but nonetheless was walking!!

I do wonder if this will ever happen one day. She is walking with her Kaye walker but to walk independently would be amazing. Sometimes as time races away I wonder if time is against us.

Aw Summer. I hope it does happen, she has clearly come so far already so who knows?

We have seen a physio a few times, I asked about stretches and she said DD wasn't stiff enough to need daily stretches so I haven't been given any (I would like a second opinion about this mind you...)

Yes I will be trying to get the referral asap! waiting for consultant's letter confirming the diagnosis so I can take it to the GP... soon I hope!

We've lost count of the number of times we've tried with a skating frame she just takes them right over - can't stay upright at all .The only way we have had any success is with two walkers - one each side- physically holding her under the armpits and keeping her upright... And she's way too big for that now!

Mini, she now owns more skis than the rest of the house - and is in the development program for the race team. She might get to race this season for the first time...

Summer, how old is dd now? Dd2 finally got rid of her croc walker after yr r and before yr1.