Cerebral Palsy
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Hi, my name is Charliesmam and my 9 year old son has CP.

CharliesmamCharliesmam Member Posts: 17 Listener
edited September 24 in Cerebral Palsy
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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  • Cher_ScopeCher_Scope Administrator Posts: 1,422 Pioneering
    edited September 7
    Hello @Charliesmam and welcome to our online community.

    I'm sorry about the lack of access to exercise that happened over lockdown, I can imagine it hasn't helped Charlie :(  What kind of behaviour issues have you been experiencing?  
     
    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.

    Please make sure to ask any questions and we will do our best to support you both.


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  • CharliesmamCharliesmam Member Posts: 17 Listener
    He is very very attached to myself. I think he may have seperation anxiety. He sleeps in my bed with me. If nit we don't get any sleep. He still puts his head inside my top etc. 
    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. 


  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi at @Charliesmam
    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?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Charlie has always soiled. He's done maybe 5 poos on the toilet his entire life.
    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. 
  • janer1967janer1967 Community champion Posts: 4,577 Disability Gamechanger
    Hi @charliesmum Welcome to the community it sounds like you have a real challenge on your hands and I feel for you especially as Charlie wants you all to himself it must be a real strain on the whole family.

    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
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Charliesmam
    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.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Thanks. Everyone seems lovely and helpful on here. Cant believe I've never been on in the past.
    I believe Charlie is autistic, 100%. See what happens this time though. 
  • Cher_ScopeCher_Scope Administrator Posts: 1,422 Pioneering
    @Charliesmam I'm glad you have found it helpful on our community.  Now you know we are here feel free to come and chat whenever you want  :) Also, that's a lovely profile picture of you two!
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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Thank you ☺️
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    We're always here @Charliesmam :)
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Administrator Posts: 10,608 Scope community team
     Great to have you with us @Charliesmam
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 684 Pioneering
    Hi @Charliesmam
                                  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 
  • CharliesmamCharliesmam Member Posts: 17 Listener
    Physio is attending school to see Charlie once a week now I believe which is fab. He managed to get his first occupational therapy appointment and she is working on a sensorydiet to try with him. We've had. A few days out recently but he doesn't like leaving the house. Finally managing to get him to go in the bath again and I'm doing his stretches twice a day.
    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. 
  • Tori_ScopeTori_Scope Administrator Posts: 1,308 Pioneering
    It seems as though things are starting to look up now @Charliesmam! I think a virtual appointment to get to know the team sounds great :) 
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 684 Pioneering
    Hi @Charliesmam
                                   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. 
  • CharliesmamCharliesmam Member Posts: 17 Listener
    I am hoping the virtual appointment works. When the physio asked to speak to him on the phone however he hung up on her.....ive spoken to him the m about it though and said they just want to introduce themselves so it's not as scary when he goes because he will already know everybody and see what the room is like. He seemed a bit happier but only time will tell u guess. 
    The nurse is calling me tomorrow while he is at school to discuss everything. 

  • Chloe_ScopeChloe_Scope Administrator Posts: 10,608 Scope community team
    Hi @Charliesmam, really glad to hear they are being in touch and are making things as easier as possible.

    I hope the call with the nurse goes well today. :)
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 684 Pioneering
    Hi @Charliesmam
                                    How are you? I hope the call with the nurse yesterday was positive. Thank you. 
  • CharliesmamCharliesmam Member Posts: 17 Listener
    Hi I'm good thanks. We had the call Monday teatime. They're calling me back on Thursday too. They just wanted to ask if I had any ideas on how to make the appointment easier for Charlie. If anyone has any suggestions I'm open to all 😂😂 they will do a virtual appointment before we visit the hospital. They're also bringing in a play therapist. They're going to go at Charlie's pace and give him time out if too stressed. I've told him we will travel to Leeds the night before as its a fair drive, about 85mins away. I don't want to add that stressful journey into the morning of the appointment. I've also told Charlie I will let him choose where we stay and what we have to eat while there.

    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 🙄 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Charliesmam
    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?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    It's an assessment to see if he's a candidate for sdr. We've been under the team for 2yrs now but they've been waiting and trying to get hi. Help with his anxiety around appointments so they can examine him. He doesn't cope with appointments at all. 
    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?! 


  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    It certainly sounds stressful but in saying that you must take great credit for having things so organised despite the pandemic and Charlie's additional needs alongside his CP.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Being a parent is stressful enough without additional needs and pandemics isn't it. Just one big new challenge. I've learnt iver the years that I need to make time for me now. I'm seriously hoping we Do nit end up in another lockdown as my parents have the kids 2 nights a week. On a Thursday we both work so its childcare, on a Tuesday its so we can have time alone together. When we didn't get that break for so long we were at breaking point, as we're the kids. I'm sure it's the same for most families.
    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. 
  • CharliesmamCharliesmam Member Posts: 17 Listener
    Can I just ask, I'm. Pretty sure I know the answer already.... 

    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 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Charliesmam
    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.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    I mean if we go into a lockdown. When they say we can't meet other households that means we cant see my parents doesn't it? 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    If there is another full lockdown the rules may change. There is no way of knowing for certain. I hope these latest measures bring the numbers under control.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Fingers crossed. I think we all want this over and done with now don't we. 
  • CharliesmamCharliesmam Member Posts: 17 Listener
    Just received Charlie's sensory diet through the post from the occupational therapist. Now I need to convince him to go on the swing in the garden before breakfast. Fingers crossed it helps. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Fingers crossed. I think we all want this over and done with now don't we. 
    We do!
    We have they recommended that you get Charlie to go on the swing before breakfast, is it to help calm him?.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    They're wanting to try him with a sensory diet to see if it helps him regulate throughout the day. We're going to try at home first for 3 weeks then they want a multi agency meeting with regards to his needs and then impliment something in school too. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    I see! That is really interesting.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • CharliesmamCharliesmam Member Posts: 17 Listener
    Wish us lukx. The nurse from lmthe sdr clinic just called. We have a virtual appointment Monday 5th then a face to face appointment and assessment on Monday 12th! 
  • Tori_ScopeTori_Scope Administrator Posts: 1,308 Pioneering
    Good luck @Charliesmam! Let us know how it goes :) 
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 684 Pioneering
    Best of luck with both of the appointments @Charliesmam, I hope they go well. Please let us know how they both go. Thank you
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Wishing you and Charlie the very best @Charliesmam! Let me know how you go.
    Scope
    Specialist Information Officer - Cerebral Palsy

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