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Toddlers with CP - advice please!

(23 Posts)
laumiere Thu 18-Sep-08 19:50:24

Our DS is 2.5 years old and was diagnosed with diplegic CP at 19 months. He's got to the whiny stage of toddlerhood but as he can't walk and doesn't yet talk, we're at a loss how to help him. He's currently an only child, but I'm pregnant with baby2 (he doesn't understand this yet).

He tends to whine when he's overwhelmed or frustrated, and we often pop him in his room for 10 min to calm down, but we were advised to ask him what he wants.

He understands Makaton but doesn't sign, cannot verbalise and doesn't really react to flashcards yet. Help! We're sick of well-meaning mums with non-disabled kids trying to advise us, it would be great to have info from someone who's lived through it! (Seriously, we've have someone telling us he'd grow out of the CP).

sarah293 Thu 18-Sep-08 20:16:04

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Nat1H Thu 18-Sep-08 21:28:11

I do think putting him in his room for whining is a bit mean! (although I know EXACTLY where you are coming from!)
If he does it when he is overwhelmed or frustrated I would help him to do what he wants. I presume, to work this out, you know what he is feeling frustrated with?
It's bloody hard work, and I must admit, the whining really used to get to me. But, if you humour him and give him what he wants when he is getting fed up, he will calm down eventually. You have got to remember that everything is so mch harder for him than an 'ordinary' child. I don't mean you have to give in to him ALL the time, as he will depend on you even more, but sonmetimes it is worth it.
Have you tried Conductive Education at all? My son has triplegia (both legs and left arm), and he learned to walk after attending sessions for 20 months. He would never have achieved this if we had depended on physio. CE has also helped his mood - he is a lot happier now that he can achieve more. They have also helped his speech, although this has only just started to come (he is 5 now).
Good luck!

laumiere Fri 19-Sep-08 21:29:37

Sorry, should have explained a bit better! We put him in his room when he's obviously got sensory overload as it gives him a chance to process and calm down. If he's whining from frustration I will try to help him work toward telling me what it is. DH struggles a bit with this but he's had less experience with young children with SEN.

We haven't tried CE though, will look into that.

Nat1H Fri 19-Sep-08 22:09:57

Oh - that ecplains it a bit more!!
Whereabouts in the country are you - might know of a CE centre nearby (possibly).
Apparently, Cerebra will fund CE sessions.

2shoes Fri 19-Sep-08 22:13:12

I took dd to a (then) scope funded CE school, it is now charity funded. (thank god for dame vera lyn)

Flocci Sat 20-Sep-08 20:06:26

When all else failed I would get the buggy out and go for a walk - would always calm dd down quite quickly, and I think it was entertaining to be out and about looking at the houses, then the park and then the shops. i figured that if she couldn't get up and about and do stuff herself I would at least give her different things to look at.

laumiere Sat 20-Sep-08 23:10:05

We're in Lewisham, SE London. At the moment the nearest CE place is Tufnell Park (about 2 hours travel away by public transport)

We're currently worrying as everyone else seemed to get diagnoses by 6mo and that the delay of 13mo in our case has caused our wee man more problems. Ah well, guilt is part of parenting I guess!

We've got a meeting with his consultant on Thurs so will bring up CE there.

Nat1H Sat 20-Sep-08 23:15:16

Just to warn you - CE is generally frowned upon by health professionals as it is considered 'alternative'.
It is one of those things you have to try for yourself and see if it works!

SparklyGothKat Sun 21-Sep-08 00:00:07

Dont worry about the delay in the dxd, Ds1 was finally dxd at 2.5 years!!! with spastic dipleigia CP. I knew from 7 months old thats omething was wrong but the HCP wouldn't listen. Anyway he is doing well now

sarah293 Sun 21-Sep-08 13:28:50

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laumiere Sun 21-Sep-08 15:10:52

We're still trying to work out what caused DS's CP as I'm expecting baby2 and it's one of those things the doctors always want to know. He was 8 weeks prem but was Apgar 9 and 10 at birth, only needed about 3 hours of ventilation and had no health complications outside of a brief tachycardia. The consultant noticed he was hypotonic at about 1.5 weeks old and assumed it was Downs (test proved negative).

Nat1H Sun 21-Sep-08 21:07:39

I would ask for your medical notes if you really want to know.
We (and the doctors) didn't have a clue until we asked for the notes - then it was startingly obvious, and quite apparent that our Neurologist had been 'covering up'.
Needless to say, we now have a different Neuro!

laumiere Mon 22-Sep-08 21:01:51

I can sympathise. Our hospital has apparently 'lost' ours. All I know was we had a perfectly healthy baby at 7.30, we were in the room with him for an hour and he was breathing fine. At 1.30 am the next day he was on a ventilator and a scan showed a right ventricle bleed. We're still trying to find out what happened in the intervening hours. If he went into resp distress fair enough, but we were never told about it, or the bleed.

We're current;y trying to use the DPA to get the missing records.

HairyMaclary Mon 22-Sep-08 21:42:41

We go to a CE place in SW London, in putney, called Small steps school for parents. it's not 'pure' CE but we like it a lot. It may be worth a look

charleypops Mon 22-Sep-08 22:16:13

Hi Laumiere

Firstly, congratulations on your pregnancy!

I have a 3 yo ds with dystonic cp and a 4 month old ds too. What helped us immensely was getting ds1 a walker so he can scoot around in the house. It's rubbish for his gait but it gives him a bit of independence, (we're getting a David Hart walker for longer walks which is good for his gait and hip development). He also likes to bash around on the computer - you can get switches that help those with little fine motor. He loves Cbeebies, As far as speech goes, he has very little, but since he turned three it's been developing really well. A huge turning point for us was when he learned to communicate yes and no. It seemed to take an eternity to get to that stage, but he did smile Inevitably he gets frustrated because he can't mobilise without help, or use his hands very well, but he's slowly learning to be patient.

I took him to the Putney CE group a couple of years ago, it was good, he enjoyed it.

I hope you aren't worrying too much about your baby - I drove myself and my partner insane with worry over one thing and another. All was fine - I opted for a CS this time round though, ds2 seems to be a totally standard baby. Good luck x

HairyMaclary Tue 23-Sep-08 07:38:34

charelypops I had a look at the david hart walker, it looks great! Are you getting it funded by your PCT or doing it yourself? Also do you have to go up to West Yorkshire to get it?

SaintRiven Tue 23-Sep-08 09:27:00

dd refuses to use her walking frame - its an Atlas. Has a tantrum when she sees it. I wanted the David Hart one but couldn't see how it would support a totally limp child and also didn't know where to see one in the UK.

charleypops Tue 23-Sep-08 14:26:12

Hi, I got the PCT to fund it after a bit of to-ing and fro-ing. And yep, unfortunately I have to schlep up to Yorkshire for it, currently there's a 6 month wait but they're happy to get started with it on the strength of a dvd of him "walking" so we'll only need to go up there once when it's ready.

Riven, you should maybe give them a ring to see if it might work for your daughter. They'd also be able to tell you if there's a special school near you where you might be able to see one in action?

SaintRiven Tue 23-Sep-08 17:43:02

wow. Our PCT will only find zimmer frames and nothing for more physically disabled children sad
You got a number/website Charley?

charleypops Tue 23-Sep-08 20:18:16

That is discriminatory as far as I can see, zimmer frames aren't suitable for everyone. I had to get evidence from the physio that a DH walker was essential as part of his 24 hour postural management, and also had to find bits from disability legislation that say children are entitled to such things so they can be included socially etc etc. It was a hard slog tbh, I think I also had to mention getting legal. Like I don't have enough to do. To be fair though, there was a very helpful person who seemed to genuinely care at the PCT. I guess I just didn't take no as an answer. I never kept a dossier of stuff unfortunately, just looked it all up on the internet or spoke to the local federation of disabled whatsit - they were very very helpful and supportive I remember and were willing to act as advocate if needs be.

I've forgotten how to do links, but if you Google "david hart clinic keighley", it's the first one that comes up.

SaintRiven Wed 24-Sep-08 08:33:17

ta. I will ask the physio/OT/social services OT etc
But here they wont give disabled children electric wheelchairs either.

charleypops Wed 24-Sep-08 10:14:29

Neither will my authority apparently, I'll be approaching charities when the time comes - although I'm sure I will go as far as I can with asking the PCT. Refusing to provide suitable mobility for a disabled child goes against government guidelines - they're not allowed to refuse something that would help mobilise your dd. Remember our taxes are paying for them to provide a service. They're not doing us a favour (though half of them seem to think they are..). It's our money, not theirs. If your OT recommends a leccy wheelchair for her, they must provide one. It won't be a posh one, but they are obliged to do it. Sounds like you need an advocate really, I don't hesitate at all asking professionals for help - Federation of Disabled is a good starting point.

Know your rights, be strong, don't take no for an answer. If they haven't got enough money allocated for disabled children then it's not your problem - they need to ask for more.

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