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.

Thank you for the warm welcome!

I mentioned on the education board that DS has taken a confidence knock at school over the past few weeks due to the increase interest in football, especially with his two best friends. His teacher has been fab with him and mentioned at parents evening that the student teacher wanted to set up an after school club, but considering they already offer sports, she thought it would be nice for an ICT club to be set up so that DS can get involved. He absolutely loves anything computer related, so I'm really chuffed with that.

I asked his Physio yesterday about extra help getting him to ride a bike. He can push the pedal with his right foot, but doesn't have the strength to push with his left, so what he tends to do is push with his right to move forward, then push the pedal backwards with his left leg so that he can push down again with his right. He has the right idea as it gets him from A to B but she wasn't very helpful when I asked who could help with skills for this. She said he needed to be 7 in order to join a bike skills club that OT run, but he's not 7 until the end of August. I thought it might have been something OT could help with regardless? Maybe being able to adapt his own bike? I'm not sure but lately as his confidence is at an all time low, I at least wanted him to have something that he could focus on.

Hello. My ds is 4 with classic ex prem spastic diplegia, he is moderately affected but happy. Welcome. In respect of th bike how is the general balance? I ask because if it's ok I would suggest trying foot straps to keep the feet in pedals because then the good leg can help pull the bad leg round?

Thanks for your reply everysilverlining. His balance is generally ok, slightly wobbly at times. Most of his friends are now riding without stabilisers so I'd love nothing more than for him to learn to pedal so he can eventually ride independently.

Would you suggest going to a bike shop or is adapting a bike something that we could get help with? Many thanks

Everydayaschool day. Can I just ask how your dd got to walking. Was it a gradual process or did it just happen one day? Also does she walk "normally" and does she have any support from piedro boots or afos?

I just ask because my dd is 2 years 6 months and we are hopefully not too far away from walking. We have plugging away, attending physio now for over a year and doing her standing frame, stretches and physio play in the house daily. For a long while we didn't seem to be making any progress but I think recently something has just clicked with her. She can walk well with a kaye walker and if someone is holding her hands albeit a bit slower and more awkward. The ultimate goal though is independent walking. This week in nursery she got herself from sitting, pushed herself up and got on to her feet completely unaided which earned her a round of applause from the staff! Hopefully our hard work is paying off. I wouldn't care if she wasn't as fast as other children or couldn't walk long distances. I would just be happy with independent walking as sometimes I feel that she misses out. At the nursery she can join in with things like sand play while holding on to the sand pit or playing with toys on a table while using the table for support but can't run about like other children including her twin sister. Sometimes I wonder what is going on in her head. She is very intelligent and has lots of words and chat. I wonder what she is thinking. Why can my sister run and jump and climb on tables and I can't?

Acatcalledchinchi,

Have a look at the links on the bottom of this page and see if there is any group local to youwww.watchtreewheelers.co.uk/about/4579835459

I know Ryan at Watchtree has had some success teaching and helping other children with cp to progress from trikes to your traditional two wheel bike but my dd is happy to go on her trike or even better but we don't have one - she really loves the hand cycling.

Albaba - keep up the stretching and physio and standing frame(if you can- make it exciting to be in there!) as it will pay huge dividends in years to come ( and it's so much easier to bribe a toddler than a teenager!)
Really sounds like your little one is doing really well and shows promising signs of being an independent walker one day- even if it is independent with a slightly different gait as long as it's functional and not damaging it's beneficial and you can work at the gait when a little older and more understanding ( heel/toe- was a common phrase used at many opportunities )

Swimming is also a fab form of exercise and their is a page dedicated to swimmers at CP sportwww.cpsport.org/our-sports/swimming

Hope everyone else is dong good too x

Hey, Albaba. How you doing matey?

As soon as we noticed that DD2 was able to bear some weight through her legs and feet, I would position her in front of the sofa, with a book or toy on the sofa to entertain her. So she's been practising standing and getting lots of weight bearing 'training' from an early age.

Then it was just bribery from there! Chocolate buttons on opposite ends of the sofa to get her side-stepping in typical young child cruising fashion. She loved this game - immediate reward!

She then started to drop to her knees and walked on her knees for quite a few months. She wouldn't (and still mostly doesn't, unless pretending to be a cat (thank you World Book Day)) go on all fours - she can't support much weight through her arms.

When she was on her knees 'walking', I'd offer her my hands and she'd pull up to standing. And then we just slowly provided less and less support through our hands. Like a typical child learning to walk, DD2 would aim for a short distance support structure, so she had a number of 'support stops' on the way to a desired destination.

Gosh I can't really remember all those milestones, but she was weight bearing at about 12 months (fully supported), knee walking about 18-24 months, tried a kaye walker about 27 months (which she refused after the second attempt) and then progressed to short spurts from support structure to support structure (wall, door frame, sofa, chair etc).

She can now walk from the living room through the kitchen (round the kitchen table) and step into the conservatory (over the door frame - we practised the holding-on technique to the door frame and stepping over for ages (2 months!)). But DD2 cannot currently get from sitting to standing unsupported though. She'll knee-walk to a support structure and pull herself up. This is our current exercise from the physio - getting to standing unsupported.

She doesn't have a typical gait - she's quite slow and you can see each step is a deliberate action, not a natural flow. Robotic is perhaps too strong a descriptor, more a stiff style of walking. So someone who didn't know about her condition could tell that there is a medical problem there. But she doesn't limp or have her hips in an atypical alignment. Her body shape looks typical. She wears piedro boots for hyper mobility in both ankles but is far worse in her right. But she can walk (just as well?) without her boots on (barefoot).

So a gradual process and lots of work, rather than an overnight success. But it has been DD2's determination to get to 'stuff' (toys, books, art stuff, chocolate etc) that I put the success down to. It's all her, not us. We facilitate her environment and provide the encouragement, but she's the one with the determination and putting in all the work.

She also sleeps a lot so I'm guessing the walking is seriously tiring her out - 3hr afternoon nap and then 7pm-6am (11 hrs) straight through. So she's getting 14 hrs sleep per day. I don't know if that's normal for NT kids at nearly 3?

Gosh, I can go on a bit….lol, sorry x

I've had a bit of a sad day today. Today was our third session with Water Babies - a company that teaches babies and toddlers to swim. All the others in the class are NT and I just feel like we can't keep up. It felt like such a rush today going from exercise to exercise that I don't think DD2 and I had any fun at all . And then all the other mums waiting for us to catch up. It was just all a bit deflating. We might not renew membership for the next term. I was really looking forward to this group as it would have her mixing in an NT group (our only one) and we enjoy swimming together and our portage swimming group. But this has just made me realise how different DD2 is. Should we ditch this group ?

Someone referred to her (not unkindly) as disabled yesterday, and I had to bite my tongue not to reply 'No She's Not!'. I was sad about that innocent comment all day - DD2 gets DLA fgs!

Like everyone else says, just off loading as I know you guys will understand where I'm coming from xx

Hi everyday sorry your feeling sad.

What is portage swimming group? Is it the same as swimming lessons? Is your dd enjoying the NT group? Does she notice she is slower? Sorry for all the questions but if my dd really enjoyed it then I would most likely keep at it. I know its hard though.

I know what you mean about 'disabled'. I really don't like the word. I have no explanation why tho.

Hope you feel better :) x

Everyday - hugs it's very hard being around NT kids sometimes. I'd just keep going if you both enjoy it. The other parents will surely understand?

I still struggle with thinking of DD as disabled - I see the differences of course but I also see her ability in so many ways. There are days when I look at her in awe at all she's managed to achieve and overcome in her short life so far!

Albaba - walking was also a gradual process for my DD . Took her a long time to gain stability and static standing balance. Making progress is the most important thing even though it can feel very slow at times!

thanks guys. I think you've hit it on the head. Neither of us really seemed to enjoy it today. I don't think DD2 had time to notice we were slower as we were so busy going from one thing to another. I just looked longingly at the other pool when we finished, thinking we'd have better fun in there, just the 2 of us having fun and splashing about . Also the water was freezing (all parents complained today) in the leisure centre.

Also, I know I'm comparing it to portage swimming. Which is definitely not swimming lessons but more of a gentle, social gathering for young children with additional needs and their parents/carers. Think nursery rhymes, soft music, bubble machines and squirty toys. The pool is in a Special school and the water's about about 32degrees . Lovely and relaxed. And a coffee and chat afterwards for the adults while the kids 'play'.

Do we need to go through such miserable slog to teach DD2 to swim? We didn't do this with our 5YO (NT). She just started lessons last Sep and is on Level 3 (whatever that means).

Chatee I had a look at your CP Sports page on swimming. It looks as though it's for older kids doing Galas etc. I couldn't see anything there on swimming lessons for toddlers. I did just have a quick scoot through though.

thanks for the support. I'm fine, just in a tizz at what to do about swimming lessons. xx

Right, I'm getting a grip here. If starting lessons was good enough for DD1, then we'll do the same for DD2. Perhaps there is a reason the swimming club doesn't take them until age 4…..(concentration levels, natural ability etc). And I'll take DD2 swimming for fun until then xx I feel happier now . lol x

…if starting lessons at 4 was good enough….

it's bed time xx

Hey Everyday just dipping in (pun intended) I would say ditch the lessons and just go for a splash about. Can't remember how old your DD2 is but much of baby swimming is just about playing and being confident in the water. Dd could get around in armbands way before she could crawl. It used to make me so happy and sad in equal measures watching her pootle around in the pool like an NT kid would on land. 2 mins looking at one thing and then off to another. Even though I am a swimming teacher. She started 1:1 lessons (with a NT teacher) about 3 which in hindsight was a waste until she was about 4. She has 1:1 lessons twice a week and we go for fun once a week(ish) and has just started swimming independently at 6. It is brilliant exercise for her and I think gives her a great sense of freedom.

Hey Kaffine I think you're so right. Playing and confidence just now, formal lessons later on. She'll be so much happier in some water wings (armbands) and splashing around. I don't think she's ready for this which is confusing as we're definitely the oldest in the class . I agree that no earlier than 4 would be better for us for formal lessons.

DD2 is 2 years, 9months.

Hi everyday I would give the water babies a miss for a while. If it doesn't make you feel good and you can get down with it then what's the point

I look back longingly at the hydrotherapy pool (deliciously warm) where DGS went for 3 years weekly (so a good run for his money) but withdrawn for good, probably to do with funding. The physio department oversaw it and there were kids like DGS so it was very relaxed and the pool was a normal size so plenty of room. Now swimming is only in the holidays when it's so crowded it's hardly worth the effort in the only warm pool locally

Hello everyone. Not been on for a while, we have just got back from Disneyland
melmo what fabuolous news that dd has started to take some steps. I remember your early posts and how uncertain things were for you and dd. I am so happy for your. Well done little girl !! And you are settling into new home.
And Albaba well done to your dd on her standing. I hope the independent steps come soon and is is chasing after her twin sis soon !!

Hello biglil I hope you are okay, I just wanted to send you my support and say that I totally get everything you say. Is all very similar to how I felt. Dd is 2 now, 21 months corrected, still not officially diagnosed but SO does have cp. the early days are so so so hard, I spent the first year and more crying! Being fobbed off, knowing she had Cp but having no one listen to me. Just want to say, it does get easier, I never would have believed it, I was diagnosed with depression, my GP was fantastic and that really was a turning point for me, as for a long long while, I thought our future was nothing but darkness. But now life really is good, what a turn around. It took me time to accept little summer was on her own milestone journey and a long while to not compare to her big sis and other babies ( it took well over a year to hit any motor milestone, friends baby's have long since over took her !), I still have my bad days and wobbles. But on the whole things are sooooo much better with more good thn bad. Hang in there. There was a long time when I couldn't even talk about CP without bursting ino tears, now I am able to tell people without crying and feeling overwhelmed. I was always looking to the future, but have, god only knows how, learnt to adopt a take each day as it comes approach which helps me enormously. Be kind to yourself and take each day as it comes.
This thread has been a lifesaver to me.

everyday sorry to hear you had a bad swimming session. We do water-babies, have been doing so for nearly a year now and dd loves it. Does the teacher know about dd?? Could you switch to a different teacher??

All other babies in our class are NT but i have told our teacher all about dd and so far we don't seem to be too behind. She has been slower to get holding in to the bar and monkey monkey, but our teacher seems to adapt to dd abilities. The only tough thing now is at the end of class, teacher wants toddlers to climb out and walk along the side of the pool, obviously dd can't do this so I just get out with her. Which makes me a little sad.
Also at getting changed time, all others are walking around and dd is sitting and sometimes wobbly.

I would say if you are not enjoying it, don't do it, but at the same time don't feel bad if the others are having to wait for you, particularly if it is helping dd core strength .

Hi summer Disneyland, lucky you:)
How was it? How exciting for you and dc. We would love to go when dd4 is old enough. Hope you and your family had a great time :) :)

It was magical - a trip of a lifetime both dds loved it. little summer was a bit spooked by the goofy and Mickey Mouse real life characters but loved most of the rides! She was even able to ride on a carousel horse on her own (v.proud moment, which to a nt parent means nothing but to us lots) Would highly recommend it !!

thanks everyone x

Massively of the Disneyland trip summerdaydreams. It's on our bucket-list . I think Disneyland paris will be next year for us as DD2 has just discovered 'all things mouse' and she'd get it now . Glad you had a fab time x

Just been face booked this from the CP charity, Scope.

One to watch: Monday’s episode of One Born Every Minute (Channel 4, 9pm) features mum-to-be Cheryl, who has cerebral palsy and experiences a dramatic delivery. We’d love to hear your stories of parenting as a disabled person. Email us at [email protected]

Hello again,

DD started independant steps about 3yo; she is now 3.6 and apart from a blip in PICU prior to Christmas is doing pretty well. Her gait is still really wonky but AFOs and baclofen seem to help albeit not as much as was hoped. Some days she will barely do a few steps even with holding hands/frame and some she won't sit still. Today she just wanted to be carried everywhere. For some stupid reason I left the buggy at home as had just gone to the park down the road which is just a few mins walk away. She wouldn't even walk between play equipment most of the time (though typically started lurching around the minute I wanted to go home). For those with toddling small people-how do you distinguish between a child tiring from CP, a child being a 3yo nuisance or generally a tired child? DD still has some language delay to tell me anything and is constantly on the go and so it is really hard to separate her behaviours apart from the glaringly obvious! She has recently been flagged up with some ASD traits too especially around demand avoidance and tbh I've now confused myself which areas she is now NT in and which she isn't and as a consequence confused myself how to handle things sometimes. I always feel I should frankly just be grateful we have got to this point but some days it is just so tiring; for me and her.

Sorry for ramble!

Hello everyone

with the swimming I would personally persevere a bit longer. I take DS to a similar class to water babies and have done for the last year. He can't walk out of the pool like the others so I just carry him, but that is one of the very few things he also can't do. He can't stand to dive either, but he can sit to dive now and I know that was such a struggle last year. He is also beginning to swin a little with his woggle and he is by far the most natural of the children under water. I have had sessions just like the one you describe though, but usually the next one is the one where he makes the most noticeable progress. I have almost given up far too many times to count though!

It's great to see so many of the "younger" children now beginning to walk. It must be a relief. I have to admit to pangs of jealousy though, but in a good way IYSWIM. I do see that DS will do so eventually, but I have to be honest and thought he would have been able to do so by now. I am beginning to fear that he is more "disabled" than we thought, although again he is managing to climb up stairs independently (holding onto a rail). At the moment the thing which is still bugging me is potty training. He just will not comply. He is unable to be bribed at least not with anything I have found, and although we know that he knows how to wee on demand, he won't tell us what he needs. He usually says things like sorry I was too busy.

Bribing with a favourite book for toilet training? Works most of the time here.

Thanks Silver :) I'm paid up for 10 swimming classes and we're only 3 in. So I'll definitely finish the course (blinking expensive, isn't it?), it's whether we sign on for more that is in question. Hopefully, like you say, our next class will be better :) I recognise that being only 3 in is being quite prematurely judging, but we really did have a pants time last week lol.

Oh heavens, potty training. Yes that too is on our doorstep. DD2 is 3 in June and recognises when she is going to the toilet in her nappy. A sure sign that we should be potty training. I hate this bit :( Off to Mothercare (online) to get the potty chairs though, as DD2 struggled way too much when we tried out the traditional low down potty we had for DD1.

Sneeze yes books go down a treat here as well. I think a lot of toddle picture book potty books come with rewards sticker charts. Need to get on Book People/Waterstones and see what I can find. Good suggestion x