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Leah’s story

Here, Leah shares some of her story about caring for her three sons under the age of 18 who are all diagnosed with Autism and a range of other needs.

Tell us about the people who you care for. How old are they? What sort of things do they need help/care with?

I have 3 children all of which have Autism, some learning disabilities and possible genetic syndrome. The boys are twins (age 15) and my younger son (age 6). They’re all amazing and despite having the same diagnosis and being twins they present in very different ways and have different needs. All 3 need to be kept safe due to a lack of understanding regarding dangers. All 3 require support to meet daily care needs and this varies from prompts to full assistance. All 3 boys attend special schools, (two out of area). This makes me feel very lucky as it means that their provision has all the adaptations and adjustments required to support them successfully. I stated that this makes me feel lucky and I say that as I witness other parents and carers having a daily fight to secure such a placement. I myself had a long battle too originally, and although it almost cost me my mental health I’m so glad I persevered.

How much of your time each day/week do you spend caring for your family member/s?

For the time the boys are not at school, then they need support and I’m caring for them physically and directly- be that: sorting medication, clothing, cooking, personal needs, dealing with emotional difficulties…. there’s also tasks and appointments during the school day that need to be dealt with such as preparing for changes to routine, dealing with care plans, EHC plans, genetics, orthotics, OT, SALT, surgery, continence nurse, short breaks and the list goes on. Having said this, again- I’m lucky as I have all this professional input and undoubtedly it takes up so much time; but I know the benefits are immense and some other carers are left to struggle without this level of input. It’s hard to put any actual timings on my caring activities but needless to say that I had to leave my career 6 years ago due to the level of need so that I could become a full time carer to the boys.

 

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

All 3 boys are in receipt of Short Breaks and this provides a personal assistant for 3 hours each per week (term time) and 6 hours during school holidays. We also have an amazing family support network that allows us some overnight respite. When not caring, I like to walk and read. I also like to increase my skill set with training and courses (usually SEND related) to better stock my armoury in preparation for the next battle! I also volunteer within community protects and support 2 local SEND charities.

 

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

Recognition that having multiple children with SEND increases need. Not having to battle and fight for everything which is constantly the case due to such a lack of funding (so you’re either fighting to get a service or fighting to keep it). Better SEND (Special Educational Needs and Disabilities) guidance that is not open to interpretation; a more inclusive society, and for person-centred approaches to be used across all services. My children’s needs are not the issue. They’re different, not broken but what is the actual issue is a general lack of acceptance and understanding. Being a carer for my disabled children has been so difficult at times, taking its toll on my own health and wellbeing. However, the one thing I’m sure of is that it’s made me a better version of myself and for that (and so much more) I’m extremely grateful.

The reality is hard, the worry for now and for the future can be all-consuming. The constant needs and demands can be draining but each day arrives with some joys (be that a milestone or just a positive day generally). It also arrives with the hope that today is the day that paves the way for true acceptance and inclusion.

Sometimes I feel completely exhausted and out of my depth. Sometimes I feel like I’ve completely lost myself. I feel selfish because I want to take a long bath, wash my hair, wear unpractical clothes, see friends, take a road trip, have a conversation of my choosing; but then sometimes this makes me feel more upset as its a glimpse into another world. I never resent my children and that’s the truth. As I said earlier, they’ve made me a better person; but sometimes I feel tired and overwhelmed especially after a long period of no sleep and when big transitions are approaching as then the worry of the future seems all-consuming. Sometimes I just need a crystal ball to show me how they’ll manage when I’m not around; or if I become ill; or if services are cut any further; or if some parts of society become even less tolerant and more ignorant. Performing any physical and practical needs can be tiring but trying to constantly plan and pre-empt for me is the part that really wears me out- my mind feels to be in constant overdrive.

How Imagineer are involved with supporting Leah:

At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.

If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

 

Peter’s story

Here, Peter shares some of his story about caring for his young adult son who has Profound Mental and Physical Disabilities.

Tell us about the person who you care for. How old are they? What sort of things do they need help/care with?

He is now 20 years old with profound mental and physical disabilities. He needs 24/7 care, 2:1 during the day with a sleeping shift over night

How much of your time each day/week do you spend caring for your family member?

Actually very little, but only because we have fought to get a Personal Health Budget (PHB) which has transformed the lives of the whole family. It is hard to manage and administer – but worth it.

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

As above, we now have time breaks. I am now a PhD student looking into PHBs

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

PHBs are great, but there is no support for you run them. This support is what is needed.

How Imagineer can provide support to carers like Peter:

  • Imagineer can provide Information, Advice & Guidance to help carers like Peter to understand the Personal Budget or Personal Health Budget process; and understand their rights within that process
  • Imagineer can support with exploring options and providing assistance for developing a Personal Health Budget support plan to meet the person’s assessed needs
  • Imagineer can provide support to family carers and their family members during meetings with Health and Social Care professionals (such as Multi-disciplinary team [MDT] meetings)

At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.

If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

Sarah’s story

Here, Sarah shares some of her story about caring for her young adult daughter who is diagnosed with Autism Spectrum Disorder.

Tell us about the person who you care for. How old are they? What sort of things do they need help/care with?

I care for my daughter who is now 20 , she needs help with daily social/ living skills. She has Autism Spectrum Disorder (late diagnosis 3 years ago), and has had a huge mental health crisis during the Covid-19 pandemic which resulted in her having to be hospitalised. She has had the most horrendous year and has been traumatised because of it (as have we her family) .
As a result, she now needs help on a daily basis. Her daily needs include: Daily living & independence skills, needing to be heard in a trusted relationship, feeling safe enough to show her need and managing new and different situations (which is very hard for her). She is building trust in her PAs and has other key supports in her church, family and a small number of trusted professionals.
She is an amazing, funny, intelligent person who is working very hard to understand herself and manage life. I am very proud of her journey.

How much of your time each day/week do you spend caring for your family member?

Currently, we are provided 25 hrs of care per week (2-1) and apart from times when she is in appointments, I am her sole carer and am available 24/7 the rest of the time. Sometimes she needs me in the night as she still gets recurring dreams of her time this past year when she stayed in a mental health hospital avoidance unit. Now at home, we can only have care at the times when the agency are able to provide staffing- not always at times when we need it.

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

Currently, even though we have scheduled care in the family home, I often still need to be available for crisis support.
When it’s a good day, I love to meet friends, go out for meals, do craft etc.
I would love to see family and friends that live at a distance. I love to go to church and volunteer to do activities.
When things open up more theatre is great to visit.

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

As a carer I have had to tackle a wide variety of issues by personal research and enquiry. It has felt that on each occasion I have had to gain skills in unfamiliar areas when there should be information available.

For example : education (EHC) tribunal, legal action, safeguarding, mental health, social care, etc.
It would be helpful if there was a source for all these challenges in one place so you don’t feel like you’re alone and reinventing the wheel each time. Peer to peer advice would also be helpful.
Professional help seems there for the client but the carer may be traumatised, in need of support eg counselling etc , and are expected to continue until breakdown. Carer hubs seem to deal with a limited range of basic support. Independent support for carers in the form of a budget for counselling/ advice, etc would help prevent breakdown of care in the home.

How Imagineer have been involved to support Sarah and her daughter:

At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.

If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

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