Hi, my name is Charliesmam and my 9 year old son has CP. — Scope | Disability forum
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Hi, my name is Charliesmam and my 9 year old son has CP.

Charliesmam
Charliesmam Member Posts: 17 Listener
edited September 2020 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_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    edited September 2020
    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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  • Charliesmam
    Charliesmam 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_Scope
    Richard_Scope Posts: 3,175 Scope online 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 and Cerebral Palsy Programme Lead

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  • Charliesmam
    Charliesmam 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. 
  • janer1967
    janer1967 Member Posts: 16,322 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_Scope
    Richard_Scope Posts: 3,175 Scope online 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 and Cerebral Palsy Programme Lead

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  • Charliesmam
    Charliesmam 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_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    @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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  • Charliesmam
    Charliesmam Member Posts: 17 Listener
    Thank you ☺️
  • Richard_Scope
    Richard_Scope Posts: 3,175 Scope online community team
    We're always here @Charliesmam :)
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
     Great to have you with us @Charliesmam
    Scope

  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 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 
  • Charliesmam
    Charliesmam 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_Scope
    Tori_Scope Posts: 9,505 Scope online community team
    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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  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 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. 
  • Charliesmam
    Charliesmam 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_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    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. :)
    Scope

  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @Charliesmam
                                    How are you? I hope the call with the nurse yesterday was positive. Thank you. 
  • Charliesmam
    Charliesmam 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_Scope
    Richard_Scope Posts: 3,175 Scope online 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 and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 

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