Respite Support — Scope | Disability forum
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Respite Support

tiredmama
tiredmama Community member Posts: 1 Listener

I am looking for advice on where I can receive overnight respite support or if anyone in the community has got any experience of this or can point me into a general direction…

My son, who is 6, has severe Autism. He needs support in almost all
aspects of his life. He also has a sleep disorder, which means no two nights will be the same and sleep is usually poor for him and myself. 

He has been prescribed Melatonin which can sometimes help with getting him to sleep, but he tends to sleep for under 5 hours and then is awake, sometimes for the rest of the day. As a single mother, this becomes exhausting very quickly. 


My son’s father is inconsistent and unreliable with his support. It tends to require me providing funds in order for him to engage with his responsibilities, which I cannot afford to do. I have attempted to discuss my needs and concerns with my son’s dad several times and for one reason or another, it does not change the situation. Unfortunately,I do not have family or friends who can help in this situation. 


I had previously requested a Carers Assessment from my local authority. I was allocated a Social Worker who visited my home and I relayed the information I have outlined above. The suggestion was an activity club which is 3 hours per week. I was told that the assessment for alternative help, if I was even “successful”, would be approximately 3-4 hours with a Personal Assistant who would take my son out. He would not be able to do activity club in addition to this - it was one or the other. He seems to do ok with the activity club, but it does not begin to put a dent in the sleep exhaustion I am feeling. I tend to use the time to get shopping or undergo tasks that I am unable to do while my son is in my care. 

Ultimately, I need time to rest and sleep for a longer period of time- overnight. It is particularly evident how much of a struggle this is becoming during the holidays. 

My mental health is becoming under strain and my health is starting to suffer. I am concerned that continuing in this way, my health will fail and will be unable to care for my son? 

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 6,983 Disability Gamechanger
    edited August 2023
    Hello @tiredmama

    Welcome to the community! :)

    I'm so sorry to hear you are struggling with getting the sleep you need. Can I ask, have you asked your GP if there is any additional support they could recommend with the Social Worker? To either get you some more hours or night support as it is now effecting your health.

    Scope has a page on finding respite care that you may find helpful to read. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    In line with what @Hannah_Scope has said @tiredmama, I can hear you need (and deserve) more support than you are currently receiving. In the first instance, it might be worth raising your concerns as well as what is going well with your local authority.

    However, I appreciate that this might not automatically entitle you to more support. It might also be worth checking what services the National Autistic Society and other charities provide in your local area. Often they offer more than local authorities.

    Please don't hesitate to let us know if there's anything else we can do to help, even if that is just listening to you. I can hear what an impact this is having on you at the moment and you don't have to go through this alone if you don't want to  :)
    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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