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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:

• Leah participated in Support Brokerage training with Imagineer to develop her own knowledge as a parent/carer and also to be able to provide peer support to other people in her local community who are accessing social care support
• Providing an understanding of what to expect from transition planning from Child to Adult social care provision & processes; and how to take the lead in those processes when the time comes for preparing for adulthood with her boys

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: