Hi, my name is staycb1985! I have a 9 year old who is severely autistic — Scope | Disability forum
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Hi, my name is staycb1985! I have a 9 year old who is severely autistic

staycb1985
staycb1985 Community member Posts: 13 Listener
edited January 2022 in Autism and neurodiversity
 I have a 9 year old who is severally autistic. 
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Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    Welcome to the community @staycb1985 :) How are you doing today?

    Thank you for sharing with us a little bit about your son's diagnosis. How's he getting on? 

    I've moved your post into our category for discussions relating to autism and neurodiversity, which I'd recommend you take a look through. I'd also recommend that you visit our category for parents and carers to discuss anything relating to parenting and family life.

    Do you feel as though you receive enough support at the moment?
    National Campaigns Officer, she/her

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Hi @staycb1985

    Welcome to Scope's forum. It is great to see you have joined us. Autism is an area of my professional knowledge (as well as lived experience!). Is there anything I can help you with? Take care for now and I will look forward to hopefully hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Thank you. I'm still trying to work out how to navigate the system. 

    I'm hoping to start the process for an EHCP. My son can also be, unfortunately, physically and verbally aggressive and its breaking my heart :(
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Hi @staycb1985 and welcome to the forum. Sadly I am limited in my knowledge of ASD, but there are some wonderful people on here who do.  If there is something specific you need help with just post it on here and I'm certain someone will get back to you.  Welcome again. Xxxx
    Thank you for your kindness
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Hi @staycb1985

    Welcome to Scope's forum. It is great to see you have joined us. Autism is an area of my professional knowledge (as well as lived experience!). Is there anything I can help you with? Take care for now and I will look forward to hopefully hearing from you again soon  :)
    Thank you for being do kind :)
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Welcome to the community @staycb1985 :) How are you doing today?

    Thank you for sharing with us a little bit about your son's diagnosis. How's he getting on? 

    I've moved your post into our category for discussions relating to autism and neurodiversity, which I'd recommend you take a look through. I'd also recommend that you visit our category for parents and carers to discuss anything relating to parenting and family life.

    Do you feel as though you receive enough support at the moment?
    Hi Tori, 

    Support would be incredibly however accessing it is proving more difficult. I dont know where to go now. 

    I have diagnosis, reports from S&L and Educational therapist and I've requested support from Early Help. 

    Life is proving more tasking every day and its affecting my 10 year old daughter also. We live on eggs shells :(
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Hi @staycb1985 I hope you enjoy being part of the Community. If you have any questions please ask. You will find there are people on the forum who either have or have knowledge of Autism. We are here to support you where we can. Take care.
    Thank you so much
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    Hi @staycb1985 and welcome to the forum. Sadly I am limited in my knowledge of ASD, but there are some wonderful people on here who do.  If there is something specific you need help with just post it on here and I'm certain someone will get back to you.  Welcome again. Xxxx
    Thank you for your help
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    @staycb1985 Bless your heart. You're very welcome hun. Have you spoken to anyone regarding your sons aggression? It doesn't just break your heart, it breaks your spirit...  so please speak to either your gp, social worker or even a helpline. ?

    Parentline I think is now known as Familylives. Try them as they seem to help with families who might reach crisis point. Their number is :- Helpline 0808 800 2222

    Take time out when things get difficult. Go to a different room, and if your son becomes violent then do what you need to do to make you and your daughter safe. 

    My best wishes go out to you and I hope that you are ok. 

    Xxx
    Thank you. I've spoken to anyone who would listen :( I will try that helpline though as I didnt know about them. 
    I even spoke to.CAMHS on Monday and they can't help anymore until he's 10 - as they said that this is the legal age of responsibility. I was hoping to prevent that! 
    We move rooms, but he will follow. We all stay together so we have each other for support and witnesses but it's no way to live. 

  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Hi @staycb1985 :) 

    I'm so sorry to hear about your current situation, it sounds very challenging and I can imagine things have been stressful for you over the past few months. It sounds as though you're doing everything that you can to ease the situation and make things smoother for you and your family. So, be proud of yourself and please acknowledge this.

    We would like to offer you some additional support, so please keep an eye out on your email inbox, as we will be sending you an email from our community inbox shortly. 

    In the meantime, the below resource might be helpful for you. It's information from Mencap and if you scroll down the page, there's some really helpful contacts that you can get in touch with, with regards to your sons autism and behaviour (specifically the challenging behaviour foundation):
    I hope the above is helpful and please get in touch if you have any other questions or queries for us. 

    Take care now and I'll speak to you soon.

    Libby
    Online Community Information Coordinator
    Scope

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

    Did we do a good job at answering your queries or concerns? If so, complete our feedback form now. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    edited January 2022

    Hi @staycb1985

    Thanks for reaching out to us. I always appreciate how much courage it must take to reach out. It sounds like you and your son are currently going through a lot. I hope you know you don’t have to do this alone.

    In terms of trying to navigate the process for an EHCP, is your son’s school supportive? If so, I would encourage you to talk to his SENCO/class teacher in the first instance. They might then help you with the paperwork and support you through the process. If you would prefer to do this independently or don’t feel the school are supportive, you can apply directly by contacting your local authority. You can find more information and support for EHCP's at IPSEA (https://www.ipsea.org.uk/pages/category/education-health-and-care-plans)

    I am sorry to hear your son can be physically and verbally aggressive. I can imagine how difficult this must be for you both. I am not sure how aware you are of meltdowns? But it sounds like your son’s physical and verbal aggression could be in response to meltdowns. If you are quite new to processing this language, I can imagine it being quite a lot to process so when you are feeling ready you can find out more information at The National Autistic Society (https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences). 

    In terms of dealing with meltdowns, I would encourage you to keep a log (even if just a memory log!) of what happens before and after your son becomes physically and verbally aggressive. Often it is due to under or over sensory stimulation of some type but could also be due to information processing overload, difficulties managing change and transitions or other triggers more specific to your son’s needs. We are all triggered by different things. Once you have a log, you can of course aim to reduce the meltdowns by reducing the frequency of the trigger. Similarly, if there is a similar consequence for the meltdown, you may teach more positive ways of gaining the same consequence or safer ways for your son to have the same release of emotion. 

    As I have said several times, I can imagine how tough this is for you too. Would you like to talk to us about how you are feeling? we are here for you, listening to you, and no question is too big or small  :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • staycb1985
    staycb1985 Community member Posts: 13 Listener

    Hi @staycb1985

    Thanks for reaching out to us. I always appreciate how much courage it must take to reach out. It sounds like you and your son are currently going through a lot. I hope you know you don’t have to do this alone.

    In terms of trying to navigate the process for an EHCP, is your son’s school supportive? If so, I would encourage you to talk to his SENCO/class teacher in the first instance. They might then help you with the paperwork and support you through the process. If you would prefer to do this independently or don’t feel the school are supportive, you can apply directly by contacting your local authority. You can find more information and support for EHCP's at IPSEA (https://www.ipsea.org.uk/pages/category/education-health-and-care-plans)

    I am sorry to hear your son can be physically and verbally aggressive. I can imagine how difficult this must be for you both. I am not sure how aware you are of meltdowns? But it sounds like your son’s physical and verbal aggression could be in response to meltdowns. If you are quite new to processing this language, I can imagine it being quite a lot to process so when you are feeling ready you can find out more information at The National Autistic Society (https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences). 

    In terms of dealing with meltdowns, I would encourage you to keep a log (even if just a memory log!) of what happens before and after your son becomes physically and verbally aggressive. Often it is due to under or over sensory stimulation of some type but could also be due to information processing overload, difficulties managing change and transitions or other triggers more specific to your son’s needs. We are all triggered by different things. Once you have a log, you can of course aim to reduce the meltdowns by reducing the frequency of the trigger. Similarly, if there is a similar consequence for the meltdown, you may teach more positive ways of gaining the same consequence or safer ways for your son to have the same release of emotion. 

    As I have said several times, I can imagine how tough this is for you too. Would you like to talk to us about how you are feeling? we are here for you, listening to you, and no question is too big or small  :)

    So far so good this evening. Having a fabulous night drawing and looking at places to visit on the train. He's currently planning journeys :)
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Hi @staycb1985

    Thanks for your response. I am glad to hear so far so good this evening. What does your son like to draw? I hope you can plan lots of journeys together!  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • staycb1985
    staycb1985 Community member Posts: 13 Listener
    We are currently drawing football badges. First stop of Manchester although we live 76 miles away, according to him xx
  • staycb1985
    staycb1985 Community member Posts: 13 Listener

    Hi @staycb1985

    Thanks for reaching out to us. I always appreciate how much courage it must take to reach out. It sounds like you and your son are currently going through a lot. I hope you know you don’t have to do this alone.

    In terms of trying to navigate the process for an EHCP, is your son’s school supportive? If so, I would encourage you to talk to his SENCO/class teacher in the first instance. They might then help you with the paperwork and support you through the process. If you would prefer to do this independently or don’t feel the school are supportive, you can apply directly by contacting your local authority. You can find more information and support for EHCP's at IPSEA (https://www.ipsea.org.uk/pages/category/education-health-and-care-plans)

    I am sorry to hear your son can be physically and verbally aggressive. I can imagine how difficult this must be for you both. I am not sure how aware you are of meltdowns? But it sounds like your son’s physical and verbal aggression could be in response to meltdowns. If you are quite new to processing this language, I can imagine it being quite a lot to process so when you are feeling ready you can find out more information at The National Autistic Society (https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences). 

    In terms of dealing with meltdowns, I would encourage you to keep a log (even if just a memory log!) of what happens before and after your son becomes physically and verbally aggressive. Often it is due to under or over sensory stimulation of some type but could also be due to information processing overload, difficulties managing change and transitions or other triggers more specific to your son’s needs. We are all triggered by different things. Once you have a log, you can of course aim to reduce the meltdowns by reducing the frequency of the trigger. Similarly, if there is a similar consequence for the meltdown, you may teach more positive ways of gaining the same consequence or safer ways for your son to have the same release of emotion. 

    As I have said several times, I can imagine how tough this is for you too. Would you like to talk to us about how you are feeling? we are here for you, listening to you, and no question is too big or small  :)

    Hi, I'm back. Son is in bed and wanted to acknowledge your post properly.  

    The school are aware and said that they will support with the process. 
    I've previously requested Early Help and he had been seen by an Ed Psych and a S&L therapist. 

    I'm currently working with SENDIASS who are being very helpful. 

    I'm also trying to apply for DLA and contacted supportive links. 

    I am keeping a log/diaries of meltdowns. 

    I fell better already having spoke to you all here. Thank you for being so supportive. 

    Thank you so much for even offering to listen to me. 

    :)
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Hey @staycb1985 :)

    I'm so glad that you had a wonderful, stress free evening last night and your son enjoyed drawing and looking at places to visit on the train.

    It sounds as though you're being really proactive in this process and that's wonderful to hear. I'm glad our members could help and I hope you found some of the information/resources valuable moving forward. Just remember, to also look after yourself during this time, as that is just as important as any other matter :). Please keep us updated on the process and if you have any further questions or queries, then just let us know. 

    Take care now and we will speak to you soon.

    Libby
    Online Community Information Coordinator
    Scope

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

    Did we do a good job at answering your queries or concerns? If so, complete our feedback form now. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    edited January 2022
    Hey @staycb1985

    Thanks for your response. Drawing football badges sounds like a great way to spend the evening! You made me chuckle with your last point. How very precise indeed, bless him.

    I am really glad to hear you have the support of the school and other professionals. That at least takes some of the pressure away from you, bless you. I know just how much you have on your plate at the moment. I am sure every little help helps.

    I am really glad you don't have to do this alone. Please remember, we are always here for you and are always listening!  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

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