Are the professionals just indulging me?

[Mammaka]

DD, aged 6 has CP. Can walk with Kaye-walker and a bit with tripods but is shaky and can only manage short distances really. So at home she crawls and anything tricky or long distance she goes in a wheelchair.

Now, we are busting a gut here with the walking and standing and all the professionals are pushing that along too and I felt like our big aim here is to get her walking as well and as much as possible and see how far we can make progress.

BUT it suddenly seems to be dawning on me that whereas I am hoping for a continued upward curve, actually we are headed for a plateau when eventually we will ditch the sticks and frame and just give in to the wheelchair. Hard to explain, but the odd comment here or there about the vague future always seems to be about the wheelchair, and taking things as far as we can and then compromising. The professionals won't really be drawn either way except that clearly she will always need a wheelchair, but then they are a bit vague.

It feels like I am emerging from a cloud and suddenly I get it, but it feels like a cruel joke. Why are we pushing her with the frame and the sticks if in a few years we will abandon them anyway? I don't think any of us really believe that she is going to manage completely independent walking ever, so what is the point of all this?

Come to think of it, you never see adults with walking frames do you?

Has anyone else been through this or going through this now - have your docs been more honest? Do you have a child who got to a point and then ditched the frame and tripods? I hate the uncertainty so much and feel like we put her through so much and maybe it is for nothing. Also, why give her the sort of freedom she has in her walker if it is then going to be taken away from her - maybe we should instead be concentrating on teaching her to maneouvre her own wheelchair?

In the middle of feeding DC's etc but will be back later - we have had experience of this.

I am no help but just wanted to sympathise. My dd's condition is progressive and so I KNEW wheelchair would be only option but still v hard. Because I didn't know, if you see what I mean. YOu need the CP experts here to help x

OK, am back. My DS is a bit younger than yours, 5 in March but over the last 9 months he has gone from using frame and sticks to walking independently around the house and to and from school. He still has a frame at home for all running around in the park type stuff and a frame at school for the playground and pe (although he often chooses not to use it in the playground). His sticks are becoming redundant although we still encourage him to use them for support to build up the length of time he can walk for. He cannot balance very well at all, therefore has to walk to somewhere which is when the sticks come in handy as he can then balance with them. He also has a wheelchair that we use for all visits out as DS can't walk more than a couple of hundred metres in his frame either.

However - we have been warned that as he gets older the effort of walking may become too much and he may choose to use his wheelchair full time. He may go the other way though and choose not to use his chair and put up with sticks / awkward gait and never being able to walk far. Our physios have been very open about this often saying how much more tiring it is to walk with CP but also saying that they expect DS to be an 'indoor ambulant'. Last year when I was finally giving up hope that DS was ever going to walk by himself (about a month before he took his first steps!) I asked his physio what the point was and she said that being mobile with sticks was much more conducive to independence in adulthood rather than a frame for ease of movement etc and if possible they try to aim for using sticks and wheelchair if a child is not going to walk.

We looked into getting DS a super whizzy wheelchair so that he could learn to self propel but in the end it was not right for him as that was a skill he could pick up much faster than walking and if and when he needed it then he could learn then. It is also not without it's problems in DS's case as it could lead to more inwards turning at the shoulders and therefore the hands and we are trying to avoid that in order to maximise his handwriting potential.
I do know a 14 year old with a frame and 2 10 year olds as well, at the riding for the disabled that DS goes to they say that they have a few adults who use frames for distances say from the car to the horse.

In a way I think with CP, and DS has spastic diplegia 'with upper limb involvement' (otherwise known as quad CP!), it will always be about taking it as far as you can and then compromising, i can see it coming with walking, writing etc. What is so hard is knowing how far that is and if you need to build up other skills in the meantime. I don't have any answers as in some ways I'm behind you as my DS is younger but I do understand what you are saying.

Not sure if that helps though!

Hairy Maclary thank you so much for your response - this is EXACTLY what I wanted / needed to hear. This kind of puts it in perspective and explains some things.

I think I can see that perhaps we are headed for a situation where a wheelchair will be normal whenever we are outside but trying to work on what she can do indoors where it will be obviously more practical to be able to walk a little. "indoor ambulant" makes so much sense to me. Also makes more perfect sense to not worry about the wheelchair issue until it is really necessary. Already dd is a bit keen to use hers sometimes as an easier option and we try not to encourage it.

It is the not knowing that is so hard with this - if only there was a magic test which could tell us what she sill and won't be ablt to achieve and then we can deal with it.

Can I ask you something else please? How did your son take his first steps exactly? Was he used to being upright in the house anyway with his sticks / cruising so it led on from there?

Although my dd is fab in her walker she is only a beginner with the sticks so at home crawling is what she does unless I am holding her arms, and I don't see any way that this can lead to walking. I suspect that the sticks are going to be the key thing here to get her more used to walking and being on her feet one way or another.

I can imagine how stunning it must ave been when he took his first independent steps - what a wonderful moment, and I hope it is the first of very many.

ds has yet und condtion but what we have aimed for is walking well wobbling round indoors and accepting that wheelchair outdoors.though bad days he uses indoors to

Glad I could help. Up until DS started walking he always crawled around the house, occasionally he stood up but he hardly every cruised around the furniture or walls. He did 'hand walk' with us holding both hands sometimes, but that was rare as it killed my back!

For us sticks were definitely the key, he didn't ever use them indoors and the trick was to find a specified place that he had to use them. Conductive Education was really good for us in this respect as he had to walk the 10m from the doorway to his stool every week, this built up his confidence and stability, he could take as long as he liked but he did it each and every time. Eventually we pushed him and he had to use his sticks in a certain part of the preschool he was at, he could crawl in one area, sticks in another and then outside he could use his frame. I was really hot on that and made it very clear to the staff how important it was and if he asked to use the frame we would say 'no, sticks inside and frame outside'. This carried on into school but we introduced walking outside with his sticks then too, so now he walks down the garden path to the bus on his sticks and then from the bus to school. Our physio always told us that the frame was almost more for peer interaction rather than walking as it does not promote a good walking pattern, the sticks are much better at that and we could see a deterioration in DS's gait while in the frame which was one of the reasons we were so strict about where it was used once he got more confident on the sticks

His first actual steps were very contrived. He had recently had botox and was in boot casts on both legs, it was towards the end of his 2 weeks in the casts and he was comfortable in them and his feet were at a good angle so he had a lot of area of the sole of his cast on the floor. I told him that I knew of a little girl with CP similar to him who had just started walking and could walk the gap between our sofas (about 2 steps) and I thought he could too. I stood him back to the wall and knelt about 3 steps in front of him and he walked to me!! I think the whole street heard me yell! He was so pleased and did it over and over again, it took about a couple of months for him to walk to anything but a person and after 3 or so months he was walking 20 steps. Now 9 months later his max is probably 80 steps but he is mostly limited by his need to walk too something as he has no standing balance. His gait is very awkward, with arms up and still on toes even with AFOs on and he falls a lot so it is very hard work but there's no stopping him.

I would say though that we have had intensive private physio and I do think that has helped enormously in building the muscle strength and flexibility but ultimately DS has needed us to put the structure in to move him forwards. It's very tricky and i sympathise. I almost dread going backwards now as he grows but I'm not sure that DS will ever choose to give up walking now that he has had a taste of it.

Sorry this is so long - i've been writing it over the afternoon while dealing with ill DSs!

OK so the sticks are now my new best friend! Thankfully dd has a great 1-2-1 at school and she is really pushing them and has made loads of progress, so we just need to keep that up at home. I had never thought of the fram as a tool for peer interaction but I can see that now. For a little one who wants to charge around in the playground it makes sense, but for a tenager it would matter less frankly if she was in a wheelchair outdoors.

It's interesting that your ds is doing so well with his walking but still cannot balance to stand - a very different skill I guess.

Did you also go to Bobath? We had a private physio for a while - not intensive as we couldn't afford it, but for regular sessions and she suggested it. But our NHS physio was quite dismissive and said that there we would be told things that the physios are being taught so we wouldn't get anything new, it would just be more direct. So we are still thinking about it. In the meantime we keep on dreaming that if we win the lottery we will emply a full-time physio.

I also cannot imagine that once a child has had a taste of walking independently they would ever give it up. But as you are aware of course it takes so much effort just to maintain the level they are at without going backwards, never mind going forwards.

Thanks so much for sharing all of this with me. I feel strangely happier about things - it all makes a bit more sense.

My DS (6) used a Kaye walker for ages. I made him use it everywhere and after about 2 years he finally let go one day and walked on his own! It was just like a toddler would start - a couple of steps which then led to more and more. He was about 3 and a half I think, possibly 4.
He walks around indoors all the time, but cannot manage outdoors at all, so uses a wheelchair. He can't cope with uneven surfaces or kerbs etc, and so feels safer and more confident in a chair. But I am still glad that I pushed him to learn to walk because he can be independent inside the house.
We were recently told by our consultant that we should encourage DS to do as much exercise as possible in order to keep him walking as he gets older. Apprently, for every 1lb gained in weight, the muscles have to work 3 times harder, so it is not unusual for older kids and adults to stop being able to walk. He told us that if DS could do as many different sports as possible, then he would build his muscles up and have a better chance of continuing to walk when he was older. He also said not to worry about 'how' he did the sports, just as long as he joined in.
Hope that helps.

Thanks Nat - seems I am getting a pretty consistent idea of how this might pan out ..... although first we need to get dd walking more confidently in the first place, out of her walker.

It does feel like the clock is ticking and I understand what people sometimes say that the longer it goes before they walk then the harder it gets because they are just that much bigger and heavier, and it so much harder.

In the past I was always trying to get her to do the little things the right way and got really hung up on it, but over time I have got the message that she neeeds to have a bash at everything, any way that she can, just to keep it all moving.

i have been told that ideally need keep ds from putting to much weight on.kep himon the linehe is following not above the 33% line.

As to much weight will stress his joints to much

I work in a class with a child with cp and when he started last September in reception (now in year 1) he came into school with a walker and was totally dependant of it by Christmas of that year h was walking unaided in the school outside he had his walker.

We started by him taking a few steps between two members of staff and then we increased and increased the gap between us.

Now he walks everywhere unaide, can go up stairs and then down with support, he can lift himself upfrom sitting positions.

Sometimes it just clicks.