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Hi, my name is Charliesmam and my 9 year old son has CP.
Charliesmam
Member Posts: 17 Listener
Charlie is 9yrs old and has cp. He walks unaided but the lack of physio, swimming and riding caused by covid this year has left him tighter than normal. We have a lot of behaviour issues too.
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I'm sorry about the lack of access to exercise that happened over lockdown, I can imagine it hasn't helped Charlie
Many of our members have CP or are knowledgeable about it so I'm sure they will be along to provide tips and help soon. In the mean-time, I've moved your post over to our Cerebral Palsy discussion board so it can be better spotted. You might find it handy to have a nosey around the CP board too to see if others have experienced similar.
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He soils himself. Never had had the urge to go. He is dry but dirty. Oh and it stinks. He can't physically clean himself up either. When my husband cleans him he hurls abuse. When I clean him he tells me how much I love him.
He keeps telling me to divorce dad and get rid of his siblings too. He wants me all to himself.
He doesn't s like change at all. Even going for a day out is such hard work. This summer we've been carrying around a pop up tent for him to sit in when we are out for the day.
He hates being told what to do. Very defiant.
He doesn't like staying anywhere other than at home.
Seeks out soft textures.
Doesn't like loud noises.
Can't cope with bright lights.
Everything has to go according to plan.
Normally these behaviours are shown at home, with family on days out or at appointments. He's recently started showing them in school however. On his first day back this term he actually managed to get out of the school building after watching how key fobs worked and watching where other staff members were. He was very sly.
I'm struggling with everything going on with him. I feel like I've been fighting for support since he was 2yrs old.
Good to meet you. It really sounds like you are coping with a lot. Has Charlie ever been assessed for autism? When did the soiling begin?
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He's had an autism screening but never went on the pathway. That was 2 yrs ago. They've started another one recently. He never used to show the behaviours in school and so they put it down to parenting!!! Hopefully now with more people involved in his care and him playing up for school we may get somewhere.
Have you looked into joining any support groups with other people in the same situation to talk to
Maybe join our CP cafe held every Monday and also look at that section of the forum
I hope you get dome support from social services after the new assessment
I think a reassessment is a correct step forward for you and Charlie. Here are some resources from Bladder and Bowel UK that might help to address the toilet issues.
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I believe Charlie is autistic, 100%. See what happens this time though.
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Specialist Information Officer - Cerebral Palsy
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Scope
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How are you? Welcome to the community and thank you for joining us. I can see that you have already had some helpful and lovely comments but I wanted to say hello. I'm sorry opportunities to exercise have been limited over lockdown and completely understand how this would have had an impact on Charlie and the tightness this will have caused. Please may I ask, how are you finding access to these opportunities now? Please feel free to ask any questions, there are many lovely people here on the community. Thank you
Being at school is helping. He was staying in at playtime saying his legs were aching but they've started pushing him to go out now. Once he's out all of a sudden there is no pain..... Sly little monkey eh?!
I've had an email today from Leeds hospital as he was being seen with regards to sdr surgery before lockdown. They're hoping to do a virtual appointment so he can get to know the team before a face to face assessment.
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That is fantastic news, it seems as though things are starting to move in the right direction. I agree with @Tori_Scope, a virtual appointment to allow Charlie and yourselves to get to know the team sounds like a great idea. Please let us know how things progress and please continue to ask if you feel there is anything you would like too. Best wishes. Thank you.
The nurse is calling me tomorrow while he is at school to discuss everything.
I hope the call with the nurse goes well today.
Scope
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How are you? I hope the call with the nurse yesterday was positive. Thank you.
He's very very anxious. When I asked what can be done to make it easier he said hmmmmmm just tell them I'm not going or give me an ak47 to take 🙄
Have you talked to Charlie about what the appointment is for? I think that is really important. Have you been given much information on SDR surgery?
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They referred him in to a psychologist to help but then covid came to play didn't I. All his face to face appointments were cancelled with her. She did fortnightly telephone appointments with myself discus fight or flight mode, calming techniques, emotional regulation. It helped massively through lockdown if I'm honest. However, she's now left the team and they wouldn't keep Charlie on with no appointments booked in to work with.... So now he's been discharged. We have a hospital plan to work with but at the end of the day it's a piece of paper and we've not tried it yet.
He knows about sdr. He actually said he wants to have the surgery if he can, to see if it can help him. He had lengthening surgery a couple of years ago and coped extremely well with it. The effects lasted around a year. Now he's very very tight again. He has definately deteriorated over this year with covid. He does all his stretched at home and takes his baclofen etc but he's still n I t allowed back to riding and he's onky just started back up at swimming. He onky gets 30mins a week in the pool too as it's not open for public swimming yet. We have seen a bit of an improvement since he's gone back to school. I'm guessing it's because he's being made to go out more.
Charlie's physio wanted to refer him for sdr when he was 4. I actually said no at the time as I was pregnant and it was all too much at the time for our family. I couldn't commit all the time for that with a newborn. I've regretted it ever since, but I really don't think I'd have had the time. Since then I've gone part time at work. I work on an evening so it means hospital appointments don't cause any bother with that.
It's a tad stressful isnt it?!
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At least we are all safe and well and that's the main thing. I've well and truly had enough of covid now though. It feels like this nightmare is never going to end.
If we go into another lockdown or a local lockdown we will find ourselves in an even tougher situation than before. Charlie will get more aggressive and violent. At the moment my parents have him 2 nights a week while we work. We don't finish till 11pm. Am I expected to then go pick the kids up at 11pm??
Also, it's our support network gone if we cant go to them for support. At the moment if Charlie goes into meltdown we can ship the other 2 off to grandma so they're not here to add to the stress or get distressed themselves.
Dont get me wrong, I understand the necessity of it all BUT I honestly don't think I will survive another lockdown with no support bubble. Its so unfair that if we weren't married we could still have it. Really starting to panic about it all now
Your support bubbles will be able to stay in place so Charlie can still go to his grandparents. Pubs and restaurants have to be closed by 10 pm.
Specialist Information Officer - Cerebral Palsy
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Specialist Information Officer - Cerebral Palsy
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We have they recommended that you get Charlie to go on the swing before breakfast, is it to help calm him?.
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Specialist Information Officer - Cerebral Palsy
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Specialist Information Officer - Cerebral Palsy
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