Mild CP - behaviour/concentration/physical issues - adaptations at school?

[minipie]

Hi all

DD1 is 4 and starting school in September. I've got a meeting with her school coming up, to talk about her CP and how it impacts her and discuss what might help her.

I wondered if anyone could share some things that have helped their child?

She has very poor concentration, is VERY easily distractable and fidgety, rarely finishes a task. I am not sure how to help with this other than maybe having her sit on her own, which isn't great for her? Any ideas welcome.

She is also very emotionally volatile for her age (i.e. tends to have a strop or burst into tears at the drop of a hat). Much much worse when tired. I will ask about her doing reduced hours to reduce tiredness/allow for naps, but I wondered if there is anything else I could suggest?

Physically she is very mildly affected (the behaviour is a much bigger issue tbh). She will just need a bit of extra help and time for things like dressing or cutting but she can do most of it.

However I don't know whether to ask for more specific adaptations like a special chair, lidded cup at lunch or beanbags for PE - they would help her, but they would also "mark her out" to the other kids?? My DM says don't mark her out as different since she can manage without, but I think struggling to manage (and consequent frustration) could mark her out in a worse way iyswim.

Please share any ideas! I should mention it's a private school, inclusive ethos and good staff ratios, but I don't think they have had very many pupils with SN.

Thank you.

[minipie]

Sorry that was longer than intended!

[Itsnothingoriginal]

DD is 9 with mild CP at mainstream primary school so I can tell you a bit about our experiences!

I would definitely suggest an adaptive chair as it helps DD a lot. She's now got a Posturite cushion (provided by OT) which is a fairly new piece of equipment and very low key. It just attaches to an ordinary school chair and can be moved around depending on the activity she's doing. This gives lots of core support and this really helps when they're doing something for extended periods.

DD doesn't have particular issues with behaviour but does have fairly severe anxiety and sensory difficulties. This is what her plan concentrates on the most tbh. She needs a lot of time and reassurance from teaching staff not just physically but emotionally too.

DD did shorter hours and a longer phased start in reception which definitely helped. She also does a shorter day if she gets particularly tired and sometimes misses PE if she needs to.

Success will really be down to how good the staff are and how much they understand about her condition. We've had mixed experiences dependent on the individual class teacher and how engaged they are with us!!

[minipie]

Thank you!

I will look up a Posturite, sounds excellent. DD doesn't have an OT as it was thought there wasn't much they could help her with, so I don't know what equipment is out there. Hmm I wonder if I should revisit the OT idea now she is school age.

May I ask, how has your DD found primary school? How have you found it? What does a "good" teacher do compared with a not so good one?

[minipie]

Hi itsnothing, sorry another question, may I ask which cushion she uses?

Posturite cushions

[gigglingHyena]

DS is 10 and at mainstream, he's got quite a different set of issues but we have the same dilemma about when to push for adaptations which then make him stand out more, and when to let him muddle through.

In hindsight I wish we had pushed for some things much earlier. Recpetion/y1 the children didn't seem to question anything different, it was just the way things had always been. With things which have been introduced later there is always someone who'll ask about it, a teacher who assumes it can't that important since he's not had it till now. DS himself then tends to try and avoid using it.

One thing which has helped is rather than just DS having a piece of equipment they have a few in the classroom so others can use them too. Things like wearing ear defenders, or the www.tts-group.co.uk/pop-up-concentration-desk-barrier/1004416.html desk barrier he uses don't stand out so much when they are also there as class equipment (his own stay in his draw).

Would a water bottle work rather than a lidded cup? All the kids in our school have a bottle in class and lots of them take them into lunch. We've also used wow cups which have some more grown up looking options.

[Itsnothingoriginal]

Hi Minipie, the supportive seat DD has isn't on their website or online as far as I can see! It's a new product and custom built for each child and our OT arranged for measurements to be taken for DD at home and at school (she has one at home too for eating/homework etc).

I would definitely suggest getting an OT referral before your DD starts school as they have been invaluable in terms of support over the last few years and they have also done a lot of liaison with school.

're teachers. We've had mixed experiences I think because her CP is very mild and she CAN do most things, there has been a tendency with some teachers to forget how much harder she's working at keeping up with her peers! The emotional/sensory stuff has been much more obvious of late so school have had to take this seriously. Fortunately both her current teacher and the Head are brilliant and have some fantastic strategies for dealing with these issues as well as being aware of her fatigue levels.

Hth but happy to help with anything else if I can

[Tainbri]

My DS has hemiplegic CP and the "hemihelp" website has a pack specifically for schools detailing the physical and hidden challenges children with CP could or do face at school with advice for school on what to look out for and how to support. worth looking into

[minipie]

Thanks both, really good advice.

Yes by lidded cup I meant a water bottle really - and if lots of the kids use those at DD's school then it's a non issue, I will just ask the school about that. I had assumed open cups all round but maybe not.

It does sound like we need an OT - I had never heard of concentration barriers or thought about ear defenders! I think the medics (and I until recently) have only focused on her physical side which is v v mild. Need to bring up the other stuff and ask for a referral. And also I guess an OT will be far better at knowing what adaptations are easy/normal for schools and what is more difficult, and liaising with school as you say.

Good advice giggling about younger kids not noticing so much and introducing things earlier rather than later. I hope that having bits of extra kit might also help remind the teachers of her difficulties - like itsnothing says I worry they will forget as it's not outwardly obvious (I forget myself sometimes!) so a visible reminder might be good in that sense.

Thank you, really helpful.

[minipie]

Tainbri I have it - two copies in fact! That's what got me thinking about all this. I thought I might offer one copy to the school but can't work out if that will come across wrong (might seem patronising maybe?)

[gigglingHyena]

If you've got a relevant pack then I would offer a copy. My son's senco has always been very happy to take anything like that we can offer. School budgets don't stretch to many books and resources and those that are only relevant to a few children come low down the list

[minipie]

thanks giggling

[Itsnothingoriginal]

Wow the Hemihelp resources are brilliant! Just had a look at the website and there is loads on there Not seen these before as my DD has the Ataxic type and there's nothing out there about this type of CP.

[Tainbri]

There is also a Facebook parents forum (and website) worth looking at for the charit " parents hemi chat" Been a lifeline to me!!

[minipie]

Thanks Tainbri! I can't seem to get the forum on the Hemihelp site to work (not sure if it's broken or just me?) so that fb forum sounds good. Will investigate.

[TribeOf5]

I've worked in primary schools with SEAN children for 7 years, my suggestion would be to get as much as you can in place in the early years. Young children (EYFS, Y1) tend not to have issues with differences (chairs, cups, support aids etc) that's unfortunately later on in life.
A PECs schedule and choice board may help with concentration and stability within the school day.
Fiddle toys for any period of time they are seated and having to listen (carpet time, input before lesson etc) could extend the amount of time they are successful in listening and allows them to still remain part of the class.
And OT would be a great thing to get in early, it would give the school something official to go by once given the OTs recommendations. Every school will have its own way, but you normally find that they will not want to put too much in place before they have assessed the child in the learning environment for at least half a term. If there are things you want in place then push for it on the agreement that it can be phased out if it isn't necessary.
PECs at home can be good for behaviour too, you can get lots of free resources online, but most schools have access to the official PECs program so could work with you at home as well as in school.
Meet with the SENCo, they will be the one overseeing all that happens, building a good relationship with them will be helpful in the future.

I also have an SEN daughter who is now in senior school so have experienced the process from both sides (although she attended SEN schools)

Hope some of that is useful :)

[minipie]

Thanks Tribe. Yes I'm expecting them to say "see how it goes" before putting things in place, which is fair enough. And that gives me time to get an OT in place too. The one thing I want to have agreed in advance is reduced hours when needed - as I want to be able to give her the time off before her behaviour becomes a problem iyswim!

[TribeOf5]

There's no reason they shouldn't accommodate you with that :) (hopefully)
It's a bit of a battle getting everything in place but hopefully you have a good team in the school that will get it done right for your daughter. :) Good luck

[minipie]

Thanks Tribe. I've just looked up PECs, are they like a visual reminder of what comes next? Thought about using one of these to help with our (often very difficult) morning and bedtime routines but never given it a go... might try it, Thanks

[TribeOf5]

You can use them for a visual timetable/schedule, for a choice board when verbal communication is difficult, to help children explain how they feel when they can't verbalise it, they can help aid writing skills and sentence structure. There's so many uses, but most mainstream schools use them for visual timetables. I've used them at work and with my daughter at home. They're a god send if your child struggles with now and next.
I've just had to have a big meeting with her senior school to reinstate her PECs schedule. Keep an eye on what's happening at school and suggest a home/school communication book so they can keep you updated and vice versa.