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.

Hello everyone!!
Not been around for a while, but thought I'd pop in and say Merry Christmas!!
Dd2 is 10 now - eek!
I see there are lots of lovely newbies who have now become oldies since I last swung by, I'll have to pop in more often and see how many people I recognise!
Compliments of the season to everyone - may 2014 bring you top notch early intervention and friendly understanding therapists and developmental leaps and bounds in all areas xx

Waves to madwoman. Is there some inference there that I'm, ahem, an oldie . Not at all feeling over sensitive approaching my 40th birthday this year coming, oh no, not me…

How's your DD doing? I like to hear how the older kids are getting on. DD (2.5 years) has just been awarded DLA, a SEN with full time 1:1 support, and a place approved at mainstream nursery/school.

Summerdaydreams how you're feeling is entirely normal. I'm completely in denial about DD's disability. My world crumbled a little today when standing in the queue at Sainsbury's, I asked the little girl behind me her age - she was showing me her new slippers that mummy was buying - and she was 2.5 years. Exactly the same age as mine but they are poles apart. It's moments like that which make it so clear how far behind our DD is and reminds us that she is indeed disabled (I don't consider her disabled, she's just our Victoria and perfect and gorgeous in every way ).

At 2years, our DD had just started the 4 point crawling. She was standing supported / cruising before she could crawl. So please don't be dismayed by the lack of crawling at this stage. DD can now take 20-30 independent steps. We think she'll need a wheelchair for longer distances as she tires easily and is still very unsteady on her feet.

Your hopes for your DD are not going to offend anyone on here. We all want the very best for our kids, and this is a safe place where we can come to share our thoughts and feelings and drink wine

If the cap fits, everyday... ... (I can say that as I'm even older!)

Dd2 is grand, thanks. She's always been in mainstream (started out with a two day a week nursery place from her first birthday, always SA+, then statemented for yr r). We move a lot - she's y5 now, and manages with v little support (there are adaptations - she is a keyboard user etc, but she doesn't have a lot of 1-1 time).

She has a few new ambitions - currently she wants to be a physicist or chemist, write and publish books in her spare time, and ski in the Paralympics (we are currently 'discussing' her stamina levels as she wanted to start race training this year, and I want her to wait another year ;-) )

I suspect this year we will get hormones into the mix as well. Something to look forward to .

At 2 she wasn't expected to walk or talk, though - she had high rate DLA from 6 months on the consultant's say-so (originally dx spastic quad, re-dx at 4 as athetoid - so, whole body affected). She eventually did away with her walking frame as she was going into y1. We still have the wc for distance and speed, but rarely use it - she has a low-rider bike (tricycle that looks like a go-cart that all the other kids beg to ride).

That said - it's been a long old road. I can quite honestly say that the first three years were the absolute worst - she started to make real developmental strides from three.

am loving that dgs is settling so well at school! Yay! You know that dd2's infant school were brill with her, put in loads of adaptations, great 1-1s, and then the following year everyone wanted to go there!!! I am thrilled he is doing so well - I'll need to trawl back and see what I've missed!

I'm loving your DD's ambitions . Oldest DSD is in her first year at uni doing Chemistry - she loves it but is hard work. I prefer physics (I'm an engineer, well for 2 more weeks at least lol). I wish your DD well in all her aspirations! I think the 2012 paralympics were just so inspiring. DD1 (NT) has just started gymnastics (5 years old) and, as they are an inclusive club, I'm planning to get DD2 in as well as soon as she's old enough .

Our DD(2) really stated to make (small) strides from just after 2 years old. Once we saw some progress, it did start to become easier.

Yy, we are lucky enough to live in a small town with a gazillion Olympians, so she sees it as a perfectly 'normal' thing to do, lol. They are forever popping in and out of school with their medals . She has a much older friend with cp who was in training for Sochi, but unfortunately had a huge ski accident last season, and was told she isn't allowed to ski for this season either. (so, she sounds really precocious, but she sees it all as entirely normal!!)

I do need to google the cerebra sledge though!!!

here's the sledge, looks perfect for my 2YO, might be a bit small for a 10YO :

www.gordonellisdirect.co.uk/index.php?main_page=product_info&cPath=2_51&products_id=393&zenid=9f92e567cab3d2eba2c26de77aeed11a

off to do bathtime now….catch up later x

Hello Madwoman, lovely to hear from you and thrilled that little (big) DD is doing so amazingly well. I will be waiting to hear her name (little madwoman!) in the paralympics in the future and I am sure she will achieve all she wants in the future

POTTED HISTORY

DGS (5) rediagnosed athetoid quad as we all predicted goes to MS primary and is in the second year of reception after massive input by the LA. He loves it there anD is loved by all the kiddies which amazed us. His speech is still crap and can only manage a few words but we are looking at some private SALT. He signs a few words including 'toilet' then usually uses it! I dont think he will ever walk independently as he hasnt an ounce of balance! But loves his Kidwalk and his trike.

He now has a gastrostomy which we fought against so long, but has been best for him as we are pioneering blended diet and he now is normal height and weight for the first time in his life. And very cute and healthy. His biggest handicap, apart from the speech, is rubbish hand function but is starting to use a laptop at school, so in the future we hope something computery.

He has a baby brother (9mo) and they love each other apart from a bit of hair pulling (baby) and retaliatory scratching (DGS)! Amazing to see the baby bro do it all with such ease

Grand sledge! We adapted our own at that point, nowhere near as swish, but glad Cerebra have got it together!

Aw, dgs sounds as though he's doing fabulously. I did lol at the re-dx they did sound so very similar!! Wowsers, that baby is 9mos! I think I popped in last when she was early pg! So pleased everything is okay. Dd2 was statemented for communication as well as her physical needs, so ks1 is a bit of a blur whilst they sort everything out. Blended diet sounds exciting - and so pleased the gastrostomy worked out well. You know we fought against/ deliberately avoided, but it was obv the right decision for dgs - what a strapping lad!

Lol at hand function. Dd2 can finally manage zips as long as they are nice and chunky. we bought a button hooker last year and she was thrilled. Asked if we would buy her a pair of jeans The sensible OT finally realised that trying to get her to do buttons without any help was really a waste of time. At 5? Yeah, I think her hand function could have best been described as pants, too. Balance was definitely the hardest. Dgs sounds more involved, but dd2 had bags of walking nous, just no idea how to stay upright - she'd let go and then career across the room, toppling as she went. She could 'walk' long before she could stand still and remain upright, and would just tip over, not collapse at the legs...

I am so glad they have him on a laptop early. We wasted a bit of time with everyone trying for pencil work first, even though keyboard user was written into her statement - I guess they feel they are obliged to try!!

Aw. Belated Congrats to dd!

Bumping for holsandb

DD (giddypants) says thank you and xxx She was around sometime but I forgot to mention this when she wasn't busy

DGS can strangely enough manage zips provided its a fairly chunky pull. How little bugger would endlessly expose himself to cold weather by undoing his jackets wonderful that was

He can manage the trigger on his new (indulgent nanna (me)) scalextric!!! Loved seeing his face with the cars whizzing round. Even better if they fly off the track but DD says they are much better now than when her DB had one which flew off the track ALL THE TIME!

Cerebra sledge looks fab but they need to invent a rubber inflatable for CP kids as it looks like we'll need it soon!

…..waiting for holsandb to bring the .

Where are my manners ? Here's a glass of waiting for holsandb xx

Can anyone recommend me a good pushchair for dd. We are looking to get a new one. We have a 3 in 1 at the moment, its so big and clumpy we want just a pushchair. Dd is nearly 10 mo and is now sitting independently. Any recommendations would be really appreciated, we have looked at loads but don't know what ones are going to last. We have always went for more basic ones with other dd's as we didn't need themfor as long. We think dd4 will need hers for quite a while as her R leg is showing signs of tightness/ weakness. Thanks

The good old reliable mini city jogger would be my choice if you didnt need too much in the way of support. Its got a good recline for when DD gets tired and can fit a child up to 4 or more depending on the size of the child. Light as a feather and folds really easily to fit into the tiniest boot If you need extra support you are looking at OT sorting out something but the Leckey Goto seat insert may be what you need.

We have an OBaby Atlas stroller. It is lightweight but not flimsy. A standard pushchair that doesn't have any additional SN facilities. Reclines quit far (but mot flat) and foot rest comes up so lots of snoozing potential for little ones. Even though our DD couldn't sit independently until about 21 months, and she sat well in this. Downside is that at 2.5 years, her legs are now getting too long for it (feet are dragging below the foot support strap) and we're going to ask about a wheelchair now. It's lasted through 2 kids and only now being 'passed on' due to DD2 growing out of it.

Sneezecakemums' jogger sounds good as well and sounds as though it may last longer for a bigger child.

quit? mot? quite. Not.

We have the Cerebra sledge and are just waiting for some snow to try it out. It has an additional space on the back where my 4 year old can sit or I can put my shopping. My daughter was given hers as a gift - probably the best Christmas present ever!

In terms of a buggy I have a mountain buggy urban. I bought it on eBay but love it so much I'm thinking of buying a new one for the next few years. It reclines totally and folds flat too with wheels removed, although it's not terribly light to carry it's a dream to push. I tried it with my 4 year old who fits well and also my 6 yr old who was a bit tight on leg room so I know it would last me another few years.
I guess buggy choice depends on where you'll use it. We do a lot of walking through fields so a mountain buggy is perfect but a little large for clothes shops.

After recommending this thread thought I better pop in and say Hi and Happy New Year!
We are good had a lovely quiet Xmas and NY with family. Dd survived her 1st term at school. Behaviour was pretty dire towards the end of term. But she was just so tired and I guess frustrated with having to try so hard all the time. Fine in school but screaming snot filled melt downs by the time she had to leave the playground. Her reading is coming along well but as we thought writing is very hard due to her visual processing issues. School have finally agreed to starting her on a keyboard now rather than waiting for 2/3 years and she is typing 3 and 4 letter words confidently. Physically she is doing well too starting to stand independently and high kneel. So much of it is still about confidence though. She flies about in her Kaye walker and hand hold walking. Tried her again wih sticks tonight but she just flung them around the room :(

We had a baby jogger elite until last year, roomy and light. You could add a snugg and go too to stop slumping if that's an issue as the seat is pretty wide

Hope everyone is well

We have a baby jogger too, ds is 3,10 at the moment and still fits in it. Also slept in it at NYE when he finally conked out at 10.30pm.

Kaffeine thanks for popping back in, can I ask if dd has a statement? Ds sound fairly similar.

Also can I ask those of you have had sdr how your little ones are doing post surgery? We are still thinking about it, and very unsure so any information anyone has and may share would be great.

Thanks for all your replies. We will be using it for the school run 3x a day and we also walk a lot, different types of terrain. I have looked up everyone's recommendations and the all look great, I can never make my mind up :) will report back once we have chosen one.

If you are off roading I would always go for a specific jogger type buggy. They still do well in urban use but the urban buggies get a bit stroppy in mud! We have a special tomato jogger which is SN but I think way too big for your needs at the moment but is fabulous to push in all terrains.

much She does finally have a statement (well the Scottish Eq) It has been a long hard slog. We got told repeatedly she didn't need one or fit the criteria. In the end I formally asked in writing to have a decision making meeting and guess what she did meet the criteria. It has taken a couple of drafts to get something worth the paper it is written on. I now feel happier that her 100% 1:1 time is slightly more protected with all the budget cuts.

She is 15 months post SDR and continues to make slow but steady progress. Still the best decision we ever made.

This may sound stupid but what is a jogger type buggy?

Melmo a jogger type buggy normally refers to a 3 wheeler such as the baby jogger or mountain buggy.