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

Hi Moomin I asked our Bowen therapist today, and he said that there were no contraindications for using Bowen on clients who had epilepsy. He did say to make sure you mention it at your first appointment though. He said the Bowen massage was so gentle it had very few contraindications at all. xx

Thanks Everyday !
At the moment we're all full of cold , so not been able to see a therapist yet.
Hope you're all well xx

You're welcome. Hope you get better soon - hate snotty colds

Just seen this pop up again so thought i'd pop in for a brag . My blooming child knows no bounds and has joined the school debate team (yes, she of the 'not likely to become verbal' dx). Two competitions down, two gold medals in hand. Un-freaking-believable. I am so chuffed that the judges are seeing past her dysarthria and listening to the content. The down side is that now she wants to argue about everything...

Failed totally on the ice skating field trip though. She stayed in school in the library.

Every, we are ex-forces too. have you ever utilised the SSAFA services? I used to go to the special needs seminars every year when we were in the UK. Very interesting from a service viewpoint and v helpful in terms of moving around with a family member with a disability.

Hooray, people are posting, I had given up checking the thread in all honesty. Welcome to Moominmama!

Joining in the Bowen chat, we had about 6 sessions of Bowen at the beginning of the year and I'll be honest and say I didn't notice any difference. I think he was in the midst of a growth spurt though. Then we moved and I've not bothered finding another practitioner close to where we live now.

We are currently trying to get DS considered for SDR surgery so going through referrals process now. He's almost at the end of his Botox/serial casting and it seems to have made a huge difference, he can now get his feet flat on the floor with ease and he has nice, flat AFOs to wear once this last lot come off. The previous pair had a huge build up at the heel to counter the tiptoe walking but these are totally flat! Very exciting.

I wondered if anyone had any strategies on making their child do physio when they don't want to? We try to make it as fun as possible but sometimes even things like making him walk up and down the stairs every day, if he's tired he will flat out refuse and we are out of ideas of how to 'make' him (obviously not force, but coerce I suppose ). Has anyone tried things like a sticker chart or similar which can be reviewed daily for a daily reward or something like that? Ie if you walk up and down the stairs twice a day you get a sticker, and three stickers a day = an extra something (but don't want to use food). Any ideas?

I was a bit of a militant physio mama, and there was never really a choice lol. I would put her through her paces with alarming regularity. The physio was coming to the house and she was aghast at our exercise regime. (although she did later come round to the 'slightly to the right of Attila the Hun' style of physio planning, and borrowed some of our methods to use with other kids lol)

Fortunately at that point dd2 was v biddable - it's only of late where she is less inclined to do her speech exercises etc. Once she was old enough we transitioned her to more formal exercise classes and reduced the physio (she started ballet before she could stand without holding on to something lol.)The ballet teacher was great, and the physio was completely on board. Both of them worked together to check feet and ankles. We also bought a trampoline long before she could walk, and this really helped with her balance, core strength and stretches in an environment where it didn't matter if she couldn't stay upright (great big net and a bouncy landing).

It was pretty interesting seeing her ability on the trampoline change from year to year. I'm a big fan of looking for alternative methods that achieve the same result for older kids (from about 4) to reduce the conflict over doing formulaic exercises.

Hi Madwoman. No, we never accessed SAAFA. I don't think we've ever had the need. The only support we got on board with, was a department at Innsworth (I think) who collaborated with Desk Officers at posting time to ensure that the posting area met with our schooling etc requirements. Never really used that either though, as I engineered my final 4 postings in the same county. DH was posted all over the place though, while I enjoyed all the stability . I think if we were both forced to move around more, I would have probably sought their help - they sound really useful. I miss it all now, my 'extended family' .

Madwoman massive congratulations to your DD on her debating gold medals - what a fantastic achievement! Love, love, love proud parent/grandparent posts .

Hi Babs I'm still here, just been lurking for a bit . Sorry you didn't see any difference with the Bowen; these things are usually all worth a shot, but I don't suppose everyone gets the same results. Glad the Botox/serial casting has made a big difference - our pead and physio have just referred us for Botox and mentioned splints too, so we'll see where that takes us.

As for physio, we encourage DD's gross motor skill in activities that we know that she loves: 4-wheeled scooter, tomcat trike, trampoline (my parents got this), hula hoop (just kind of waves it around), throwing and kicking a ball in the garden, swing park trips, walk to feed ducks etc - just getting her moving and being generally active. We're lucky that she's really well motivated though. Other children joining in, is also very encouraging to her - whether that is her school friends joining her in her 'exercises' at school (her lovely 1:1 organises this), or whether she is copying her older sister at home or at our local gymnastics club lol (she got a badge last week ).

Our rewards are arts & crafts: the promise of endless sheets of white paper and paint pots, and both my DDs are putty in my hands . Super-special encouraging treat would be 10-pin bowling (using the ramp and gutter-guards for kids).

I don't ask her to keep going when she's tired though; I'll pick her up or she'll sit in her wheelchair. I think if I pushed her when she's tired, she'd start to become reluctant to do anything, as she wouldn't be 'in control' of the activity or when she could stop. She knows she can go flat out till she drops, as she can rest as soon as she wants to. DD is 4 YO if that context helps. xx

Well don to your Little Miss Madwoman !
Babs, we try to incorporate physio in most of DD's favourite activities. As an example, instead of painting sitting at the table, she would do it in standing, We got a wii and found the bowling and tennis games to be quite good for standing/balance.
We also have some games she likes that we only play with upstairs, so she looks forward to going up the stairs

Hello hello hello !!! So glad to see this thread is going again.
I have missed you all and hearing how things are going!

Things have been a bit busy here in the sense that we welcomed a new addition to our family. DC3 made HIS appearance 7 weeks ago, we were thrilled to have him full term at at bang on 41 weeks and bring him straight home but as you can imagine things have been very busy.

Albaba dd is now potty trained in terms of wees - although it took a lot longer for her to ask for the toilet than my eldest did and so she mainly went when asked but was able to hold it. At times it was very frustrating because I knew she knew what to do but for what ever reason she didn't but things did finally click. Poos are however another matter and still very much hit and miss, it's very frustrating but I am trying to bite my tongue encourage, encourage, encourage and hope like the wees it clicks. For us we are lucky she tends to wait till bedtime and her nappy, I Don't really have any advice but you are not alone! And I share your frustrations.

We do a sticker chart for physio and like others try to incorporate it into everyday activities. Also for going up stairs etc or walking, making it into a competition with a bit of reverse psychology seems to work for DD eg " I bet you can't beat mummy to the stairs?" DD is quite competitive so that tends to get her going. Also making a big thing of calling the grandparents, friends etc and telling them how did has just done x or done z.

I can recommend Bowen, unfortunately we had to stop after our therapist moved and we moved too. Our private physio was so impressed with it, she is herself training to be a therapist in it so we get some during our home sessions.

Hi Summer lovely to see you again! Congratulations on your new baby boy; hope you are both well and that you're getting lots of rest and snuggle time. I remember those lovely, but tough, early days so well . Sounds like your DD is doing really well - a lot of your post resonated with me .

Thanks Everydayaschoolday for talking about how you manage the physio. I have the same outlook as you, in that when I think he's too tired to continue I would rather allow him to stop in case he starts resenting it. But my husband and I differ on this, he thinks DS should be made to keep going no matter what. Even if he's crying and sobbing. But I really struggle with this, I feel it's not conducive at all to instilling this active lifestyle we both want him to strive for. DH feels that he's going to have to work at this for the rest of his life and that he needs to get used to it now. But he's only 3 Usually DH takes the lead at getting him to do his exercises when we're both home and if I disagree with his approach I try not to say in front of DS (which is impossible when we're all there together) as then it appears we are not a united front (DS already thinks I'm a soft touch) so it just breeds annoyance between DH and I. Thinking about it I think the main issue is communication and the fact we both have different approaches, without much of a compromise available. The worst time is getting DS to climb the stairs every night for bed. He's always knackered, especially on nursery days, and he only ever wants me to help him up, if DH tries to make him he screams and cries for me. But I'm now 34weeks pregnant and struggling physically with helping him,

We have started getting a private physio round so i might ask him what approaches he recommends and how to deal with getting him to do his exercises when he's tired. i suppose one answer is to set aside time in the mornings for it but there's always a million things to do before I get him off to nursery, although thats a terrible excuse I know. Argh.

Oh and congratulations Summerdaydreams I had wondered how you were getting on Fab news you got to 41 weeks, well done! How have your older two welcomed their little brother?

Babs That all sounds very difficult . I'm with you though; you're going to struggle to foster self-motivation and a positive outlook on physical exercises if your forcing exercises through tears . If DH won't compromise, I'd ask the physio to advise both you AND your DH on motivational techniques, what to do when DS is tired (i.e. rest) and how many/how long a reasonable exercise should be, so as not to overdo it. It's a tricky one: on the one hand you don't want to ambush, undermine or humiliate DH, but on the other a professional's perspective might make a compromise easier to achieve. Take heart, your DH is doing what he thinks is the very best for your DS (he cares and wants to support your DS in this) - it just happens that we think a different approach is better.

Any exercises that we might do after about 4pm, would be gentle stretching rather than strength. And as for going upstairs in the evening - a non-starter for us after about 6:30pm, but can manage stairs in the late afternoon / early evening if holding hands and making a game/competition out of it.

Hope you guys can work it out. It's encouraging that you both want the same outcome .

Your DS will have the best chance for success when he wants to do it for himself. You are the sun and your DH is the wind:

www.storyarts.org/library/aesops/stories/north.html

Babs , with going up the stairs in the evening, why not try a few steps at a time? I would start with DS going up 3-4 steps on his own then help with the rest, stick with that for a week or two and then increase the numbers of steps as he gets used to doing it. He might find it easier to tackle the stairs if he knows he doesn't have to climb them all?

Thanks for the good suggestions everyone Since my frustrated post we have found a few strategies to get him up the stairs each night, usually one of the five or six things we try will work (a 'race', a 'counting the steps', a 'left foot or right foot' game, negotiation - an extra book if you walk all the way, and a few other things involving chasing me/DH for a soft toy which gets thrown progressively further up the stairs).

The private physio sort of sat on the fence, said they do try and make it fun in therapy but day to day tasks can't always be fun, but if he's obviously too tired not to force him. This still leaves room for interpretation though. Anyway feel more positive about things after the physio session, lots of what they said made lots of sense. Thanks everyone for your suggestions! and I love that story, Everyday, thank you for posting it.

Next thing (sorry!). Has anyone dealt with quite contrasting opinions between experts? Our NHS team are very pro-orthotics, pro botox and casting etc. But our private physios are very anti all of these things, preferring instead to work with the muscles as they are - saying that splints don't allow muscles in the leg to be used (and so strengthened and lengthened), that the weakness from serial casting isn't worth the flattening of the foot you get, and in general have an approach which is much more about building up the strength of the core and targeting the muscles in the legs which control his walking. They did concede that the casting was good to get a flatter foot, it has given them a window of opportunity to strengthen that muscle, although they lament the loss of strength which they say is very, very common, and hugely underplayed by proponents of serial casting, and have explained that now his centre of gravity has shifted with the angle of his legs it's now making him even more unstable and weak than before as he's essentially having to learn to stand/balance/walk again.

I'm inclined to think what they're saying makes more sense, the orthotics have always struck me as counter-productive in lots of ways. Yes, he may be able to walk better with them, but it's definitely come at a price (lost tone, increased tiptoe walking, lack of use of various muscles groups) - and ultimately I'd like him to be able to get up every morning and be able to walk independently, on his own, without aids, rather than get up and strap some plastic onto his legs. It's difficult to know which path to go down as neither really complements the other. It feels like the NHS just want to be able to tick a box that says 'can walk independently with or without orthotics' to make him technically independent, without really working to make his quality of life the very best it can be.

Has anyone found similar? And apologies for the second huge post in the space of a week!

Hi Babs. Watching for responses on your query as we've just been referred for botox and splints, and I'm not totally convinced either.

Bumping to welcome Minipie to lurk or join in with this thread .

I have been wondering the same about orthotics babs and. everyday. And like you have the same conflicting views between private and NHS. I get the impression that often (not always but in DDs case) they hare being offered just so that they can tick that they are doing something. At our last orthopaedic appointment they said they wanted to refer dd for afos but I am not so sure they will make any difference to her mobility which is our constant goal. yes they may help DDs foot flat but ultimately they will not automatically improve her function and that imo is what needs to be worked on, The CP will always be there. I don't know if that makes sense to you? I know what I mean but often find it hard to make it all make sense out loud iykwim .

I have been finding things a little tough lately. I have been anaylsing and thinking things over and I think the reason my old worries (how will DDs future be? Will she cope with being the different one etc) have resurfaced is because we are having to apply for primary schools. And it is the next stage of our journey. DD seems too little and young to start reception Any words of wisdom? I think a few of you will be starting next September too?

We have been referred to wheelchair services in preparation for this. This makes me incredibly incredibly sad and teary. I hate the idea of dd needing a wheelchair even though it is reality and it will help her. I like things now when she can sit in a buggy and not look any different from other children her age. Perhaps I am building this up in my head to be a bigger thing than it is but I just don't want dd to need a wheel chair. Poinless really because she will. I will never let dd hear my fears or worries over this, to her I am making it exciting but inside I am so so sad .

babs I hope you are well, not long until your baby arrives. Both DDs are loving their new little brother. DD2 is loving her new role and we have really seen her mature since his arrival. . We anticipated some jealousy but so far so good...

Glad the family are doing well Summer. DD2 is in Reception now. I was keen to get her into the same school as her older sister, as I knew it was a really good inclusive mainstream school. But I also visited a special school to compare the provision. I was led by our Ed Psy to have DD2 in mainstream as she would have more opportunity to learn from her peers.

Words of wisdom? Visit as many schools as you can and choose one where you've met the SENCO and you got a good feeling from them and the school in general. I completely trust the school to do their very best to be inclusive and to care appropriately for my child. Accidents have happened (naturally), but the school have never let me down.

Does your DD have a Statement/EHCP? This makes DD2's inclusion so much easier. Early engagement with the school (they came to DD2's nursery setting to attend her last two IEP reviews there as way of a handover) made for an easy transition into a new setting.

I felt the same about Wheelchair Services. I cried when we were referred. I cried at the first appointment. I cried when I collected the Wheelchair and put it in my car. But DD2's face lit up when her new wheels arrived and she was overwhelmed with happiness when I put Disney Frozen spoke guards over her wheelchair wheels. And I can't wait for the excitement tomorrow when she sees that I've Pimped Her Ride with Christmas lights! I understand your sadness now, but mine did pass and it's now just a part of normal life for us - the wheelchair does not define my child, and she didn't change overnight when her wheelchair arrived, she's still the same DD2. I know you know this, and I know that you need to be sad because that's just how we both felt/feel, but be assured that you might not always feel so sad. Sending lots of hugs. About to out myself with a picture of our Pimp My Ride wheelchair.

everyday as always you know what to say!
Absolutely love DDs wheelchair I bet she was beyond excited when she saw it!!!!

We visited the school dd is at this morning and in so many ways it seems right, accessibility, location and the senco and head came across as very warm people. Another thing that reassured me was that they have another pupil who uses a wheelchair which makes me feel more confident that they will be geared up to cater for DDs needs. My hope is that dd will continue to improve and be more and more able with her walker and transitions so that a wheelchair is not always necessary.

She currently has a statement which will be transferred to an EHCP in the new year, when we meet with all involved to review and will be pushing for full 1:1 support.

Brilliant. Glad the school visit went well and you got good vibes and reassurance . We transfer from Statement to EHCP in the spring.

We didn't have to push for the 1:1 - everyone said it was required for enabling accessibility and for H&S (think fire alarm evacuations). Hopefully it will be as easy for you.

Top tip (again this was provided, but I did check with them when they sent me the draft copy of the Statement for approval): do check if you get 1:1 provision over the lunchtime period (non-teaching time). 1:1 can be allocated for teaching time only, but my DD2 needs support to access the dining hall, her support chair, to change her top after independent eating efforts, and to have support/supervision in the (boisterous!) playground. Her 1:1 for lunchtime is a different staff member, so her class-time 1:1 gets her lunch hour too. Both ladies are lovely .

You are a great tips!!